‘No coincidence’

Jamie’s cord blood and autism story

More than a decade ago, Jamie and her husband decided to store their daughter’s precious cord blood with us. Two years later, they stored again for their baby boy. After he was diagnosed with autism, these umbilical cord stem cells have given him a real chance at getting better.

‘No coincidence’
Jamie’s cord blood and autism story
More than a decade ago, Jamie and her husband decided to store their daughter’s precious cord blood with us. Two years later, they stored again for their baby boy. After he was diagnosed with autism, these umbilical cord stem cells have given him a real chance at getting better.

‘No coincidence’
Jamie’s cord blood and autism story
More than a decade ago, Jamie and her husband decided to store their daughter’s precious cord blood with us. Two years later, they stored again for their baby boy. After he was diagnosed with autism, these umbilical cord stem cells have given him a real chance at getting better.

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A story of hope…

“This is a story of hope and belief; hope for the future of my little boy and belief in the persistence of people in science who devote their lives to relentlessly pursue the answers for causes and cures of the numerous afflictions that affect humanity today.

I have chosen to write this piece under a pen-name in order to protect the privacy of my children and perhaps you, the reader, will look beyond just the names to the actual story and facts as we experienced them. Someone wise once told me, “There are no coincidences, only an unknown purpose”. Today we totally believe that.

In the spring of 2009, I was waiting to see my obstetrician at Guys & St Thomas’ Hospital when I came across one of the zillion pamphlets left in the doctor’s waiting room; a snippet of information about cutting edge storage of a baby’s umbilical cord blood by a company called Cells4Life, which was begun by doctors wanting to do this for their children.

Coming from a family of doctors and having recently lost a 3-year battle to save my mother’s life from a condition that could not even be conclusively diagnosed, I knew there are more questions that nature presents than our medical science has answers to. Having consulted leading doctors all the world over, I also knew that stem cell science was poised to achieve breakthroughs across multiple frontiers.

Case Studies

Read more of our stem cell case studies.

“The cost was less than £100 per year over 20 years and may be the equivalent of taking just one less family vacation in that whole time, to fund this gift.”

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Giving a lifelong gift

I knew immediately that if I could give my child one lifelong gift it would be this; perhaps in some way an insurance policy to counter as-yet-unknown ills, banking on the promise of where science is headed, and knowing that if I could protect my child in anyway I should. The way I saw it, the cost was less than £100 per year over 20 years and may be the equivalent of taking just one less family vacation in that whole time, to fund this gift.

My daughter was born a few months later and her cord blood, collected from the umbilical cord within a few minutes of her birth, was whisked away to be cryogenically stored for the next 20 years. Two years later, I was back at St Thomas’ to deliver my son and yet again I reached out to Cells4Life to collect and store his cord blood.

3 years later, my worst fears were coming true and my beautiful healthy boy was suspected to be on the Autism spectrum; at age 5 he was diagnosed with high-functioning Autism. There was despair for how he would go through life and grief for why it had to be him but there was also the beginning of a quest to find answers for anything that could make him better.

He was verbal but not really stringing words together, he was often lost in his own world playing endlessly with his cars, made minimal eye contact, didn’t want to interact with his peers or anyone unknown, he couldn’t play with sand or dough or paint – just obsessive about cleaning anything on his hands, his food choices became more limited by the day, he would bolt and run in public places with little regard for safety, he liked numbers and knew his alphabet but couldn’t put them together to read, he couldn’t hold a pencil even by the time he was 6… and so much more.

Autism symptoms

Children with autism might have symptoms such as:

  • Not responding to their own name
  • Avoiding eye contact
  • Not returning a smile
  • Getting upset by tastes, smells or sounds
  • Repetitive movements
  • Talking less than other children
  • Repeating certain phrases

“He was often lost in his own world playing endlessly with his cars, made minimal eye contact, didn’t want to interact with his peers or anyone unknown…”

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Discovering cord blood stem cell therapy

Very often parents are vilified for trying new and at times dangerous treatments and therapies; there are also people who capitalise on the desperation and vulnerability of parents like us to promote what can only be quackery. The Internet of course is equally a gift and a curse but even so, there is real information out there, real people who are pushing the limits of medical discovery and we just don’t get to know often enough.

Cells4Life send out emails to their members every so often to talk about the new advances in stem-cell medicine at leading research facilities across the world; it was one such email in 2014 that gave us hope. Dr Joanne Kurtzberg & team at Duke University Children’s Hospital had experimentally used cord blood to treat a little girl with Cerebral Palsy and seen dramatic improvement in her deficient motor function. The brain is the most complex and least understood part of our body and here was a case where an intervention had pretty much woken up this child’s brain when there is no hope otherwise.

They were extending this experience to study if umbilical cord blood (from the child or a donor) could help children with Autism and other neuro-developmental conditions. (Refer the Duke ABC study). They conducted a small safety study with around 25 children and found that the infusions had limited side effects apart from, at worst, a mild fever or allergic reaction. Here was a small ray of hope. The results of the safety study were published and showed significant promise but like any other parents, we were worried about the experimental nature and the big what-if-it-leaves-him-worse-than-before question.

We then saw a feature on CNN on a family whose daughter was one of the 25 children with Autism to receive an umbilical cord blood infusion (https://edition.cnn.com/2017/04/05/health/autism-cord-blood-stem-cells-duke-study/index.html); this little girl had a 8-9 out of 10 improvement in her symptoms.  Hearing her parents’ conviction resonated with us very strongly and we began the process of reaching out to Dr Kurtzberg’s team at Duke University.

“The brain is the most complex and least understood part of our body and here was a case where an intervention had pretty much woken up this child’s brain when there is no hope otherwise.”

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Arranging the transfusion

Luckily, even though we had missed the enrolment for the larger phase-2 study, they could offer the treatment to my son under their expanded access protocol (an allowance granted by the FDA to offer experimental but safe treatments on compassionate grounds). It meant paying for it since we weren’t a part of the trial and no insurance covers these expenses but we knew that our little boy deserved a chance. After many months of follow-up and paperwork, finally we got clearance in October 2017 that my son could receive an intravenous infusion of his cord blood at the Duke University Children’s Hospital in early 2018.

However, there was a long distance to cover between getting the approval and getting it done and that’s where Cells4Life came in. Their team, specially our deepest thanks to Tim Norris, coordinated the entire process of first sending a sample of the cord blood to the Duke team for testing and cross match and subsequently the actual cord blood via a specialised medical courier, getting pre-clearance from US customs to send the frozen cord blood straight to Duke and making sure the whole operation was a success.

What came across so beautifully was how humane and concerned everyone involved with this was and the kind of effort they put in, even making follow up calls with the US team at 10pm in the night to work around the time difference. Around the same time, my husband’s job was restructured and we found ourselves in a sticky situation but Cells4Life helped us with the courier costs which would have been huge and I can never thank the company enough for extending themselves so my little boy could have a chance at getting better.

“What came across so beautifully was how humane and concerned everyone involved with this was and the kind of effort they put in, even making follow up calls with the US team at 10pm in the night to work around the time difference.”

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The impact of stem cell therapy

Our little one received his cord blood through an intravenous infusion at Duke University in the spring of 2018. It’s been just over a year and we followed up the intervention with intensive therapy, oftentimes with him and I heading back from the UK to our home country, and staying away from his dad and sister to get blocks of therapy. You see, autism is not a disease, it is a developmental disorder and the stem cells work internally but he would need the environmental input to help him learn to process better and develop the missing bits.

He is now reading small books, writing between lines, colouring, getting better at Math every passing week, playing with all sorts of textures, he’s eating better and sleeping better, he can communicate his needs really well, he can now scoot down the road to and from his school and I’m not worried he will bolt onto the road because he waits patiently for me at the crossing to press the walk button, he is socialising to a point where he goes up to unknown kids in the park and asks “do you want to play?”

My daughter’s friends love him, he shows empathy and concern to the extent that when one of his occupation therapy group-mates gets distressed, he drops everything that he’s doing to go and comfort her, he cried and hugged his dad the last time he was going away for therapy and said “I don’t want to go daddy, I’m gonna miss you”. I can go on but more than anything else, when he puts his hands around my neck and looks into my eyes, I feel he can look into my soul.

“He is now reading small books, writing between lines…he is socialising to a point where he goes up to unknown kids in the park and asks “do you want to play?

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Looking to the future…

My son will always have autism, I know that. Very often when it comes to children’s health conditions, parents’ feedback or experience is termed anecdotal. I can’t prove that none of this would have happened without the stem cells, that’s up to the folks in science; Some may also say it was all the therapy, of course that has helped but I wonder if these changes could take place in such a short span of time?

Our goal has never been to make him “Normal” but really to set him on a path of learning and being able to live a non-dependent life despite the cards that nature has dealt him and every step and every intervention that takes us a bit closer to that goal is totally worth it. I think back to what the mum of the little girl said on the CNN program and I can say with the same conviction today that if, on an effort scale of 1 to 10, we spent 8 managing his autism before the stem cells, we now spend less than 3. To us that’s really something and it’s enough to have made a decision we took 10 years ago, totally worth it.

Our message to every prospective parent is to consider umbilical cord blood storage very seriously. Medical science has progressed further and faster in the last 30 years than it did in the last 100 and the pace is only becoming more frenetic. Stem cell medicine has the potential to deliver answers to some of the most persistent medical questions and health issues sooner rather than later. For children of this generation, born (or yet to be) in a world where science may eventually have more answers than questions, it is perhaps one of the most enduring gift parents can give their child.

We will always be exceedingly thankful to Cells4Life for doing what they do and the spirit with which they do this; there is at least one little boy in the world who is better off because of that.

Thank you for leaving your pamphlet at a waiting room at St Thomas’ where I found it… because there are no coincidences, only an unknown purpose.”

 

 

39, Mum of two beautiful children

“On an effort scale of 1 to 10, we spent 8 managing his autism before the stem cells, we now spend less than 3. To us that’s really something and it’s enough to have made a decision we took 10 years ago, totally worth it…”

Jay’s journey

Read about Jay Shetty, who received his brother’s cord blood in 2016 to treat his cerebral palsy.

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