Stem Cell Clinic

Quinn Waters: Weymouth, Massachusetts three-year-old is seeing the world for himself – CBS News

Weymouth, Massachusetts Aside from immediate family, no one was allowed in the house to see 3-year-old Quinn Waters of Weymouth, Massachusetts. And more importantly Quinn wasn't allowed out.

"We basically keep him in a bubble just as a precaution," said Quinn's father, Jarlath.

"Even a common cold could be something that will bring him back into the hospital," said Quinn's mother, Tara.

Parents Jarlath and Tara Waters say Quinn's natural immunity was temporarily wiped out after he got a stem cell transplant to treat his brain cancer.

Fortunately, the kid is a fighter and as we first reported a few months ago, he kept a mostly positive attitude.

But it still stunk.

He sees all of this happening and he knows he's stuck inside. And there would be days when Quinn was literally pounding to get out.

Unfortunately, staring out a window is a poor substitute for walking out a door. Quinn's connection to the outside world has been limited to whoever passes by, which hasn't been all that limiting, actually.

"It started out with family members coming to the window," said Jarlath.

Then the neighbors started showing up to entertain the police caught wind and pretty soon topnotch performers were just showing up on Quinn's front lawn.

It turned into a vaudeville stage out there.

"Yeah, the window kind of became his window on the world," Jarlath said.

It got so you never knew what might happen by. One minute it could be a dog parade the next, a team of Irish step dancers everyone brought together by word of mouth and a will to help Quinn get better.

Which his parents say did start happening.

"It's the positive energy from all these people that we believe has gotten him through his sickness, you know. You can never repay, you know (emotional), just maybe pay it forward," Jarlath said.

Being indebted never felt so fortunate.

After this story first aired in August, things got even better for Quinn light-years better. By Halloween, doctors had released him from home confinement and free to be a kid again he rushed outdoors at warp speed.

He also got to drop the puck at a Boston Bruins' game and feel the sand between his toes at the Massachusetts shore.

There is no greater curse than cancer but no greater blessing, than beating it.

To contactOn the Road, or to send us a story idea, email us:OnTheRoad@cbsnews.com.

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Quinn Waters: Weymouth, Massachusetts three-year-old is seeing the world for himself - CBS News

‘We didn’t worry when 2-year-old refused to use potty – then her lips went blue’ – Mirror Online

It was back in November 2015 when Lynsay Hughes and her husband Andrew, a project engineer, both 38, first noticed their two-year-old Evie was out of sorts.

Wed begun potty training and it was going really well, but Evie suddenly started refusing to go to the toilet and got very whingy, explains Lynsay, a swimming teacher.

Shed been quite a sickly baby, so initially we didnt think much of it.

When Evie went off her food, got dark circles under her eyes, and seemed to have no energy, Lynsay took her to the GP.

The little girl was then referred to North Tees Hospital, near the familys home in Stockton-on-Tees.

She spent five days there, before eventually being diagnosed with a chronic kidney infection, and discharged.

I just wanted to get her home for Christmas, says Lynsay, also mum to Oscar, now nine.

She was fine for a few days and then her health plummeted her legs, feet and fingers began to swell and her lips went blue.

Andrew took her to the park and she vomited everywhere. We knew something wasnt right.

Lynsay went back to hospital, where Evie was given an ultrasound.

A doctor came out and said, Do you want to wait for your husband? but I never dreamed it would be anything serious so I said, No, just tell me now.

He explained that while he wasnt a paediatric expert, they had found a mass around Evies tummy and wanted us to be transferred to specialists at the Royal Victoria Infirmary in Newcastle.

Andrew met us at the bigger hospital we knew it was more serious, but I still wasnt thinking about cancer.

Even when we went to meet an oncology consultant, I wasnt panicking because I honestly didnt know what the word meant.

The first time we realised it was cancer was when a doctor came in the room and said, Im going to take a biopsy of Evies tumour.

What she had a tumour? Andrew and I just looked at each other in shock.

The couple were soon ushered into a room full of different medical people consultants, nurses, anaesthetists and were told the devastating news: Evie had stage 4 neuroblastoma.

Neuroblastoma is a very rare childhood cancer that affects only about 100 children a year in the UK.

I was in complete shock, recalls Lynsay.

I said to the doctor: Are you telling me my daughter has cancer? he replied: Im not just telling you she has cancer, Im telling you she has the beast of childhood cancers. Those were his exact words.

Andrew burst into tears, but I couldnt take it in, I just held his hand feeling gutted, totally heartbroken.

It was on 22 December 2015 when that devastating diagnosis was confirmed: Evie had a 13cm tumour the most aggressive kind which was wrapped around her main artery.

The disease had also spread to her bones. Knowing staff would be short for the festive season, doctors moved quickly.

On Christmas Eve, the poorly toddler began her first, gruelling round of chemotherapy.

It was only when Evie had her line to receive her chemotherapy fitted into her little body that the enormity of the situation finally sank in, admits Lynsay.

I let out some noise that Andrew tells me was like a shriek and I fell to the floor. It was like the world had stopped.

But somehow we dragged ourselves through Christmas, trying to put on brave faces to watch Oscar open his presents.

Evie was too poorly to care about gifts.

The next year went in a blur of treatment and surgery.

Evie was put on a 10-day cycle of different chemotherapy drugs for 80 days to target the disease in her bones.

Then she had the tumour surgically removed, a stem cell harvest, high intensity chemotherapy with stem cell replacement, and radiotherapy every day for three weeks.

She was also put on a clinical trial for immunotherapy, designed to kill the bad cells while protecting the healthy ones for a further six months.

It was unbelievably traumatic. If Evie woke up in a different room to the one she went to sleep in, or if we werent there, she would scream and scream.

We explained to her that she had a nasty bug in her tummy and the doctors were giving her medicine which would make her feel funny but would make her better in the end.

We named her feeding tube Tommy and her chemo drips Wally and Dolly, to try and make things less scary for her.

She took her beloved Teddy everywhere.

When Evies blonde curls fell out in lumps, my friend who is a hairdresser came and cut it into a bob for her.

We told her she had superpowers, thats why her hair had fallen out.

Her big brother, Oscar, was so sweet when he came to the hospital, he would make friends with the other children on the ward and be so protective of her.

There were times when I was terrified she might die, but I just willed her to be better and wouldnt allow myself to think the worst.

We put on a brave face at home for Oscar, but when I was in bed I would cry and cry and my heart would be racing with the anxiety and stress.

I just had to focus on the next part of the treatment.

In between we tried to do nice things we took her to The Lion King in London as a treat, and we went camping in the Lake District.

Lynsay gave up teaching swimming to be with Evie full time, Andrew cut down his hours as a project engineer, and Lynsays sister would take care of Oscar when both parents had to be at hospital.

Finally, in March 2017, after more than two years of treatment, the family received the news they had been longing to hear: Evie was cancer-free and in remission.

To mark the momentous occasion, the hospital have a special end of treatment bell that children get to ring at the end of their chemotherapy.

It was a huge day for us.

Evie wore a new dress with rainbows on it, and our whole family came to the hospital to watch her ring the bell.

We all cried buckets.

Afterwards, we went to a restaurant in Newcastle where everyone made a fuss of her and had a big party, with Evie getting a knickerbocker glory.

Shes two and half years in remission now and living a normal, healthy life.

Shes in Year One at school, has lots of friends, and her hair has grown back. She loves dancing and drama and riding her bike.

This Christmas we will be surrounded by our family at our home and we are determined to enjoy every second.

Evie is madly into Barbies and Frozen and cant wait for Father Christmas to come. Shes definitely been good!

And we have the best present you could possibly imagine our family, together.

Neuroblastoma (neuro = nerve, blastoma = collection of tumour cells) is a tumour arising from particular nerve cells, which run up the back of the childs abdomen and chest and into the skull, following the line of the spinal cord.

The tumour occurs either in the sympathetic nervous system, or closely associated adrenal glands, and is usually, although not always, located in the abdomen.

Neuroblastoma affects around 100 children each year in the UK. It usually affects children under the age of five, and can occur before a child is born, because it develops from the cells left behind from a babys development in the womb. It is the most common solid tumour in childhood after brain tumours.

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'We didn't worry when 2-year-old refused to use potty - then her lips went blue' - Mirror Online

Upstate SC toddler survives rare cancer and the risky procedure used to treat it – Greenville News

Outcome means a special Thanksgiving

Hailie and Treylin Hyman saw the bruising on their baby girls leg as a sign that the active 1-year-old was learning to walk.

But as a blood test would later reveal, little Maci was actually suffering from an extremely rare blood cancer that threatened her life without a risky treatment - atreatmentalmost as dangerous as the disease.

In the beginning, it was very scary, Hailie Hyman told The Greenville News.

I couldnt think of anything but the bad things, she confessed. It was all about the statistics. And the statistics arent good.

Hailie Hyman holds her daughter Maci, 1, before an appointment at the Prisma Health Pediatric Hematology Oncology Center Monday, Nov. 4, 2019.(Photo: JOSH MORGAN/Staff)

Terrifying months followed the diagnosis, punctuated by one critical complication after another, leaving the Boiling Springs couple to wonder if Maci would survive.

Somehow, though, the blue-eyed toddler pulled through.And now her family is looking forward to a special Thanksgiving with much to be grateful for.

The Hymans journey began last February atMacis 1-year-old well-child checkup.

We had no idea anything was wrong, her mom said.But they did a routine (blood test) and a couple of hours later, we got a call saying her platelets were very low.

The Hymans were referred to a hematologist who found other abnormalities in Macis blood and scheduled a bone marrow biopsy to investigate further.

Hailie Hyman holds her daughter Maci, 1, before an appointment at the Prisma Health Pediatric Hematology Oncology Center Monday, Nov. 4, 2019.(Photo: JOSH MORGAN/Staff)

During the procedure, the child suffered an aneurysm in an artery and went into cardiac arrest. The team performed CPR on her for 20 minutes before she was stabilized, her mom said.

Later, in the pediatric intensive care unit, she suffered internal bleeding, too.

It was really hard, she said. There were many nights that I would just pray and pray and pray.

Initially believing Maci had leukemia, doctors subsequently determined she had myelodysplastic syndrome, or MDS.

The condition occurs when abnormal cells in the bone marrow leave the patient unable to make enough blood, according to the American Cancer Society.

Its rare, afflicting as few 10,000 Americans a year, though the actual number is unknown.

Maci Hyman, 1, interacts with hospital staff before an appointment at the Prisma Health Pediatric Hematology Oncology Center Monday, Nov. 4, 2019.(Photo: JOSH MORGAN/Staff)

In children, its rarer still. Most people arediagnosed in their 70s.

We were told that just four out of 1 million children get it every year, Hailie Hyman said.

That made the diagnosis elusive at first, said Dr. Nichole Bryant, a pediatric hematologist-oncologist with Prisma Health-Upstate, formerly Greenville Health System.

Shes the only one Ive seen in my career, she said.

Maci had to have regular blood transfusions, antibiotics and other medications to fight the MDS, Bryant said. But the only hope for a cure was a stem cell transplant at the Medical University of South Carolina in Charleston.

When they said that was the only treatment plan for MDS, I of course went to Google, Hailie Hyman said. I read about transplant patients and ...all the complications. It was terrifying. But no matter how many bad things I saw, we had to do it. There is no other option.

The transplantis extremely risky.

Hailie Hyman looks at a fish tank with her daughter Maci, 1, before an appointment at the Prisma Health Pediatric Hematology Oncology Center Monday, Nov. 4, 2019.(Photo: JOSH MORGAN/Staff)

First, high doses of chemotherapy are given to destroy the diseased bone marrow, leaving the patient without an immune system, so fighting infections becomes a challenge. Then healthy donor marrow is infused.

Its also fraught with potentially life-threatening complications, including graft vs. host disease, which occurs when immune cells from the donor attack the patients body, Bryant said. Other complications include permanent kidney damage and gastrointestinal problems.

They have to go to hell and back, she said. But its the only option for long-term survival.

Maci had a really rough start, suffering lots and lots and lots of complications, Bryant said.

Her kidneys failed, so she wound up on dialysis. When she couldnt breathe on her own, she was put on a ventilator. And because she couldnt eat, she had to be tube fed.

Hailie Hyman looks at a fish tank with her daughter Maci, 1, before an appointment at the Prisma Health Pediatric Hematology Oncology Center Monday, Nov. 4, 2019.(Photo: JOSH MORGAN/Staff)

She had blistering sores in her mouth and throughout her GI tract, her mom said. Because her liver wasnt functioning properly, her abdomen filled up with fluid that had to be drained. She was bleeding so profusely in her lungs that one of them collapsed.

Maci, who was sedated through much of it, was put on full life support, she said.

That night we almost lost her, her mom said. We were in the hallway crying our eyes out. We didnt know what do to or think. It was pretty scary for a while.

Somehow, Maci made it.

There were so many times during her first months that it seemed like she would not survive, Bryant said. So the fact that she is here ... is really a miracle.

Macis family found an unrelated donor through the National Marrow Donor Program, enlisting hundreds of other people to join the registry in the process, Bryant said.

Nichole Bryant, M.D.(Photo: Provided)

It was an important part of their journey that maybe didnt directly benefit Maci, she said. But if everybody did that, we wouldnt have difficulty finding a donor for anybody.

Doctors have no explanation for why Maci got MDS. She didnt carry the genetic mutation for it and there is no family history.

She is a rare child - and not in a good way, her mom said, adding,Youve got to laugh sometimes or youre going to cry.

Maci was admitted to MUSC on June 2 and released on Oct. 14.

The Hymans, both 22, spent the entire time in Charlestonwhile Hailies mom cared for their older daughter, Athena, now 2.

Treylins employer held his welding job open for him. And other friends and family members did what they could to help.

We had many, many people very generously donate to us to cover expenses at home and living expenses where we were, Hailie Hyman said.

We are thankful for everyone who helped us through it the cards, the gifts, the donations. Every single cent is greatly appreciated.

They still need to travel to Charleston once a week to see the transplant doctor. In between, Maci is seen in Greenville.

She's doing well, but recovery from a transplant can take months to years, Bryant said.

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Her kidneys are functioning again so she was able to come off dialysis. But she still must take many medications, including anti-rejection drugs that suppress her immune system and leaveher at risk for infection. And she still must be tube fed.

She is miles ahead of where she was two months ago, Bryant said. But she still has a long way to go. Its a long, long road.

Macis mom says she can be up and playing one day and flopped over on the couch another. She still experiences a lot of nausea and vomiting, but is doing well compared to where she was.

Hailie Hyman pulls her daughter Maci, 1, in a wagon in the hallway before an appointment at the Prisma Health Pediatric Hematology Oncology Center Monday, Nov. 4, 2019.(Photo: JOSH MORGAN/Staff)

So as the nation pauses to give thanks this Thanksgiving, she says the family will be countingtheir many blessings family andfriends, Gods mercy, andthe doctors and nurses who saved Macis life.

She has battled a lot and overcome a lot, she said. I have no doubt she will be able to get through.

Want to know more about becoming a marrow donor? Go to bethematch.org.

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Upstate SC toddler survives rare cancer and the risky procedure used to treat it - Greenville News

13 YEAR OLD BOY WHO SURVIVED RARE CHILDHOOD CANCER TWICE SUPPORTS NEW FUNDRAISING CAMPAIGN – MENAFN.COM

(MENAFN - Pressat) 13 year old Ryan Savage, from Billingham in Stockton-on-Tees, features in a new Christmas campaign with Neuroblastoma UK, to raise vital funds for neuroblastoma research.

Ryan was first diagnosed with neuroblastoma, a rare childhood cancer, when he was just three years old. He was given a 5% chance of survival and doctors told his parents that he may not live to see Christmas.

This Christmas campaign aims to #GiveHope to families like Ryan's, by raising money for leading research projects which aim to deliver new, more effective and kinder treatments for children with neuroblastoma.

Ryan's mum Lisa says, 'Christmas is Ryan's favourite time of year - he's not a child who asks for much but he is always just so happy to celebrate Christmas with his family. Every time Christmas comes around, it's a precious reminder to our family that another year has passed since Ryan fought this terrible disease twice, and won.

'Ryan was first diagnosed with neuroblastoma on 29th October 2009 - a date that will be etched on my memory forever. He came home from nursery complaining of stomach pains. He wouldn't eat and the pain got worse, so I took him to A&E that night. Doctors thought it was constipation or trapped wind but two days later, he had a high temperature, was in extreme pain and, worryingly, he couldn't move his legs.

'We took him back to A&E and they did an immediate MRI scan. They found a tumour wrapped around Ryan's spine and we were told that Ryan could have less than two months to live, and he might not see Christmas.

Our world was turned upside-down by a cancer we had never even heard of before.'

Ryan began chemotherapy immediately, followed by surgery to remove the majority of his tumours. After a gruelling year of cancer treatment, Ryan was in remission and the family could celebrate another Christmas together.

But two years later, doctors found another tumour in his chest and their consultant said it was the worst case that she'd ever seen.

'Our little man endured another two really tough years of treatment including chemotherapy, radiotherapy, a stem cell transplant and major surgery. He also needed ribs removed as the cancerous tumours had wrapped around his little bones. By March 2012, the only tumour left in his body was a growth behind his heart. In October 2013, the heart tumour no longer appeared on his scans.

Ryan endured years of treatment including chemotherapy, radiotherapy, a stem cell transplant and major surgery, after having neuroblastoma twice.

'Seeing what Ryan went through, it breaks my heart to think of all those children fighting neuroblastoma this Christmas. They should be at home enjoying the fun of the festive season with their families. I know from personal experience that their parents will be hoping against hope that the treatment their children receive will help them beat neuroblastoma too.

'Little children simply don't deserve to be robbed of their precious early years, nor should they have the threat of their cancer returning constantly hanging over them. But there is still so much more research that needs to be done to prevent children suffering like Ryan did.'

Katherine Mobey, Fundraising Manager at Neuroblastoma UK said, 'Neuroblastoma is a cancer that almost exclusively affects children, with around 100 children diagnosed every year in the UK. Christmas is a time when families should be together and having fun, not going through harsh cancer treatment.

'With our new fundraising campaign, we want to give hope to more families like Ryan's. By funding more vital research, we can help scientists search for new and kinder treatments, give children with neuroblastoma a better quality of life after treatment, and move closer to finding a cure.'

To make a donation, visitwww.neuroblastoma.org.uk/christmas .

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13 YEAR OLD BOY WHO SURVIVED RARE CHILDHOOD CANCER TWICE SUPPORTS NEW FUNDRAISING CAMPAIGN - MENAFN.COM

Heartbreaking photograph shows the reality of childhood cancer – Yahoo News

Sophia Soto is pictured tearfully awaiting cancer treatment. [Photo: Caters]

The mother of a cancer survivor has released a heartbreaking photograph to show the reality of the disease.

Sophia Soto, from Florida, was diagnosed with stage four neuroblastoma at just 14 months old after unusual bruises developed around her eyes.

READ MORE:Girl with neuroblastoma declared cancer-free after pioneering treatment

With doctors dismissing it as just a fall, an eye specialist eventually found tumours behind her eyes were to blame.

The toddler endured 60 rounds of chemo, 20 of radiotherapy and a stem cell transplant over six months. She was snapped just before having treatment.

Sophia, now six, has been in remission for five years and medication-free for the past 24 months.

Speaking of her daughters condition, Sophias mother Rosie Soto, 40, said: The picture of Sophia upset really does hone in on the reality of childhood cancer.

She was having a lead put on her chest for her treatment, which she didn't want, hence why Sophia was so upset.

I look back at the picture now and wonder how I did it. It was so hard watching my little girl so ill.

Neuroblastoma is a rare type of cancer that mainly affects babies and young children,according to the NHS.

READ MORE:Childhood Cancer Survivors Are Twice as Likely to Have This Condition

Around 95 youngsters in the UK are diagnosed every year, making up 6% of all childhood-cancer cases,Children with Cancer UK statistics show.

In the US, around 800 are diagnosed annually, also accounting for 6% of all cases,according to the American Cancer Society.

Neuroblastoma develops in specialised nerve cells called neuroblasts, which get left behind during a babys development in the womb.

The disease tends to start in one of the adrenal glands above the kidneys or nerve tissue next to the spinal cord, before spreading.

Mrs Soto became concerned when her daughter develop bruises around her eyes, with no obvious cause.

I kept taking her to the doctors because the bruising wasn't going away, but they just said it must have been from a bump or something, she said.

Sophia wasn't referred for a scan or biopsy until I went to an eye specialist, who knew straight away it was caused by a tumour.

Story continues

She was sent for an MRI, where black spots appeared on the scans confirmed the tumours behind her eyes.

[A] biopsy found tumours on one of her kidneys as well, which led to her stage four neuroblastoma diagnosis.

Sophia discovered she had the disease in March 2014, aged just 14 months.

After extensive treatment, the youngster has been in remission since that November, but still has check-ups every six months.

The tumours behind her eyes cannot be removed, however, doctors believe they are now benign.

READ MORE: Mom beats breast cancer and then books 'dream' trip

Doctors are reluctant to remove the tumours Sophia has behind her eyes as they've said it would be likely the surgery [would] disfigure her face, Mrs Soto said.

Whilst they are tumours, doctors are reasonably confident they are not cancerous so we have decided to not have the surgery right now, but it may be something she has when she's older.

Over the worst, Sophia loves dancing and dreams of one day becoming a vet.

No one can imagine what she went through looking at her now, she just looks like a normal regular child, Mrs Soto said.

Sophia has her moments when she asks about when she was sick and has questions about her treatment scars, but overall she's a pretty happy girl.

If I was to say anything to other parents with children battling cancer, I'd say to not give up, stay positive.

It's really important not to compare your child's process to anyone else as everyone battles illnesses differently.

We're over the moon Sophia is now doing so well. We're really blessed she's such a fighter.

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Heartbreaking photograph shows the reality of childhood cancer - Yahoo News

"For the first time in 25 years this means hope" – Leeds family fundraising for life-changing MS treatment – Yorkshire Post

A Leeds family are desperately raising funds to help pay for a "life-changing" treatment that could halt the progression of Multiple Sclerosis.

Father-of-two Jean-Christophe Verro, 47, lives with MS - a condition that affects the brain and spinal cord.

There is no cure for MS and symptoms, which include vision problems, speech and swallowing difficulties and mobility problems, can develop and worsen steadily over time.

Mr Verro, a former captain in the French Marines, was diagnosed with the condition in 1995 and following a relapse in 2015, he now uses a wheelchair.

He and his wife Lisa Verro, who live Moortown, now want to raise 55,000 for private Hematopoietic Stem Cell Therapy to try and stop symptoms progressing.

Explaining the illness, Mrs Verro, 45, said: "MS itself is not fatal - it is the side effects that go through your facilities one by one.

"He could lose his brain function, start having seizures, become bedridden or have trouble with swallowing.

"It's very unpredictable. There's no cure, no drug treatment.

"We can deal with it as it is now but if he starts to lose his functions it will be so difficult. His main concern is the brain shrinkage and I worry that if he loses his functions, say in his arms, he wont be able to drive or go out into the local community.

"This would devastate him as he is very independent and works full time.

She added: "When came out of hospital in 2015 the doctors said "why don't you give up work" but that's just not my husband.

"He tries to just get on with it. He tries to live as normally as possible. He likes his job and contributing to society, he doesn't want to be on benefits.

"He just wants to be like and do what every other dad does."

Mr and Mrs Vero, who are parents to seven-year-old Oliver and five-year-old Charlotte, first became aware of the HSCT treatment during a BBC Panaroma programme.

Since then they have come across various groups on Facebook with people who have successfully had the treatment.

According to the Multiple Sclerosis Trust, the number of people who are accepted for treatment on the NHS is extremely small.

Mr Verro did not meet the criteria for the limited NHS treatment and now the family are hoping to have the treatment abroad in May.

Mrs Verro said: "If he doesn't have it in May it could never happen. His condition is unpredictable so he could not be well enough.

"This treatment would be life-changing for us as a family.

"My son's bedroom is in the attic and he's always saying, 'I want my daddy to be able to play Lego with me in my bedroom or 'I just want to play football in the park with my daddy' but it isn't possible.

"The kids don't appreciate the seriousness of his condition and how it can progress - that's what we are thinking about with this treatment.

"We have two young children, we've got to try whatever we can to stop the progression.

"We appreciate that its a very large some of money to give but I hope the the local community can get behind us."

For Mr Verro, even the possibility of receiving the treatment has given him "hope" for the future.

The SEO manager said: "For the first time in 25 years this means hope.

"Since being diagnosed with MS in 1995, I have been through every step - there's no way out of it. No treatments, no cure.

"I've tried most treatments and they come with a lot of serious side effects.

"Apparently some clinics have been offering this treatment for 20 years. I just wish I had known about it three or five years ago.

"It just feels like hope after so long - like the windows and the shutters have been closed and now here is the chance to open them out wide and take a big deep breath of fresh air."

The family have already raised 3,000 of their target.

They have opened a Go Fund Me page and will be hosting a series of events in the community.

A Reindeer Dash has been organised in Roundhay Park involving a 5k or 2k run/walk, as well as a raffle.

it costs 15 per adult and 8 per child and guests will receive reindeer antlers, flashing red nose and mince pies in the entry fee,

It will take place on Saturday, December 14 at 10am.

Jean-Christophe's fundraising page can be found here.

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"For the first time in 25 years this means hope" - Leeds family fundraising for life-changing MS treatment - Yorkshire Post

Family releases photo sharing the reality of childhood cancer – NEWS.com.au

A family have released the heartbreaking photograph of their toddler undergoing cancer treatment to highlight the reality of childhood cancer.

Sophia Soto, now six, from America, was diagnosed with stage 4 neuroblastoma an aggressive and rare cancer at just 14 months old after tumours were discovered behind her eyes and on her kidney.

The heartwrenching photograph is of Sophia having a lead put on her chest as part of her cancer treatment.

But luckily little Sophia has been in remission for five years and now looks like a completely different child compared to the one in the heart wrenching photograph.

The picture of Sophia upset really does home in on the reality of childhood cancer, her mum Rosie Soto, 40, said.

She was having a lead put on her chest for her treatment which she didnt want hence why Sophia was so upset.

I look back at the picture now and wonder how I did it; it was so hard watching my little girl so ill.

Rosie became concerned about Sophia after she began developing bruising around her eyes something she claims doctors repeatedly dismissed as being from a bump or fall.

It wasnt until Rosie took Sophia to see an eye specialist that she got some answers.

Sophia kept getting bruising on her eyes and I didnt recall her falling over or anything, so I didnt understand where they were come from, Rosie said.

I kept taking her to the doctors because the bruising wasnt going away, but they just said it must have been from a bump or something.

Sophia wasnt referred for a scan or biopsy until I went to see an eye specialist with her who knew straight away that it was caused by a tumour.

She was sent for an MRI where black spots appeared on the scans confirming the tumours behind her eyes.

It was then the biopsy which found the tumours on one of her kidneys as well which led to her stage 4 neuroblastoma diagnosis.

After being diagnosed in March 2014, the then 14-month-old endured 60 rounds of chemotherapy, 20 rounds of radiation and a stem cell transplant over a six months period.

Following her treatment, Sophia has been in remission since November 2014 and has been medication free for two years.

Sophia isnt yet classified as cancer free so has check ups every six months with specialists.

She still has tumours behind her eyes which cannot be removed due to the placement of them, but doctors believe the tumours are benign and therefore not causing her too much harm.

Doctors are reluctant to remove the tumours Sophia currently has behind her eyes as theyve said it would be likely the surgery to disfigure her face, Rosie said.

Whilst they are tumours, doctors are reasonably confident that they are not cancerous so we have decided to not have the surgery right now, but it may be something she has when shes older.

Sophia now looks happy and healthy. She loves to dance and hopes to become a vet one day.

No one can imagine what she went through looking at her now she just looks like a normal regular child, Rosie said.

Sophia has her moments when she asks about when she was sick and has questions about her treatment scars, but over all shes a pretty happy girl.

If I was to say anything to other parents with children battling cancer, Id say to them to not give up, stay positive and keep your faith.

Its really important not to compare your childs process to anyone else as everyone battles illnesses differently as every situation is different.

Were over the moon that Sophia is now doing so well were really blessed that shes such a fighter.

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Family releases photo sharing the reality of childhood cancer - NEWS.com.au

Calgary MP won’t give up effort to add donor consent option to tax forms – Calgary Herald

Calgary MP Len Webber has become a dogged advocate for increasing Canada's rate of organ and tissue donation.Crystal Schick / Postmedia

Its a crusade that began with his beloved wifes dying regret.

Calgary MP Len Webber has become a dogged advocate for increasing Canadas rate of organ and tissue donation, a fire that was kindled after his wife lost a lengthy battle with breast cancer in 2010.

When she did pass away, she said the one regret she had was that she wasnt able to donate her organs, said Webber, who in October was elected to his second term in the House of Commons after serving for a decade as a Calgary MLA.

From there, it just evolved. You start getting involved and the more you do that, the more you get motivated to do what you can.

Three years after her death, Webbers private members bill, the Human Tissue and Organ Donation Amendment Act, was passed by the Alberta legislature, establishing a single agency to co-ordinate organ and tissue donations while also establishing a provincial organ donor registry. It further required agents at provincial registry offices to ask for peoples consent to become an organ or tissue donor.

But Webber wasnt finished.

Soon after he was elected to represent the federal riding of Calgary Confederation, Webber started working on a plan to bring the conversation of organ and tissue donation to every Canadian household.

So, he turned to one of lifes two certainties as a new lever to increase the nations donor corps taxes.

Last November, Webber received unanimous consent on Bill C-316, a private members bill that will add a question on tax forms about whether people will consent to becoming organ and tissue donors. Those who sign up will then be added to the rolls of provincially run organ donor registries.

This is not a political issue; it is a human issue, he said last September in the House of Commons.

Any one of us could be in need of donor organs or tissues at any time. Just asking this simple question could increase the number of donors.

Canada remains a middling performer globally when it comes to organ and tissue donation, with about 22 Canadians per million population becoming donors. Despite consistent polling that finds about nine in 10 Canadians in support of the idea of donating their organs, only around 20 per cent nationwide have their names on donor registries, a puzzling ratio Webber has long hoped to narrow.

Webber dedicated the bill to his friend Robert Sallows of Red Deer who received a double lung transplant when he was just 17, and had become an ardent supporter and counsellor to the Calgary MP as he crafted the proposed legislation, even through deteriorating health.

He helped me lobby that bill even through his difficult time, said Webber, noting Sallows also helped him pass the bill that created Albertas organ donor registry.

Sallows died just a week before the federal legislation, which he helped craft, passed second reading unanimously in a rare show of support across party lines.

It went on to the Canadian Senate but died on the order paper when the federal election was called in September, meaning Webber will now have to start the process anew.

I lobbied hard in the Senate to get this through, but the Senate is also very political, he said. It died on the table. So, now I have to bring it back to the House of Commons.

Despite his disappointment, Webber expects the bill will now face a smoother ride among his parliamentary colleagues, though he admits the uncertainty of how it might be impacted by a minority government is troubling.

I do worry about minority governments because not a lot happens, he said. However, a bill like this shouldnt be political. Its something all parties agree with so damn it, lets get it done.

This concludes a month-long project from Postmedia Calgary and Edmonton, which examines the state of organ donation in Alberta whats working, what isnt and how the system can be improved. Catch up on the series here:

Also, Albertans share how the issue of organ transplants has changed their lives:

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Calgary MP won't give up effort to add donor consent option to tax forms - Calgary Herald