Give Matthew the Gift of Speech
By the time our son, Matthew, turned 18 months old we knew he was different from other toddlers.
He didn't play with toys in the way other children did. He didn't look up when you said his name, no matter how many times you repeated it. He rarely made eye contact. He'd climb anything and everything and loved pushing heavy toys and furniture around. He was obsessed with everything Paw Patrol (and only Paw Patrol!) and didn't show a strong interest in anything else.
The biggest sign was his speech.
Matthew rarely, if ever, spoke. I knew something was going on and that it wasn't just a simple developmental delay he'd eventually get over.
He was diagnosed with Autism within a few weeks. We started sessions with the Birth to Three program that's offered by the State of Connecticut to help children with learning difficulties.
They provided speech and occupational therapy to Matthew. They tried to teach him sign language for communication and tried to help him gain verbal skills.
At the end of the program he turned three and aged out having made almost no progress.
We moved to a town with an Autism Program starting in preschool and Matthew started full day, full week school.
Within a few months we still weren't seeing progress so we hired an advocate and pushed for further testing. Matthew was assessed by an occupational therapist, by speech therapists, and by a child psychologist.
They quickly came back with another diagnosis to add to his Autism: developmental verbal dyspraxia (DVD).
Also known as childhood apraxia of speech (CAS) and developmental apraxia of speech (DAS), this diagnosis means that his brain has problems planning to move the body parts (ie lips, jaw, tongue) needed for speech. Matthew knows what he wants to say, and thinks the words, but his brain has difficulty coordinating the muscle movements he needs to say those words. Essentially the words get stuck trying to come out.
This was why he was having such difficulty speaking.
His school provided additional therapy sessions that were now better targeted for his specific needs.
He also is provided the Extended School Year program over the summer, with an additional two hours a day one on one as well.
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When our son was born we banked his cord blood and tissue with CBR (the Cord Blood Registry). We hoped we'd never have to use it but wanted to be prepared if he needed it one day. That day came last January when he was three and a half.
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Shortly after his new diagnosis we received an email from CBR mentioning a promising new study from Duke University.
Duke University Medical Center is a highly regarded hospital that is world renowned for their medical research. They've made groundbreaking strides there in fields such as cardiac surgery, comprehensive Cancer care, the treatment of AIDs, and bone marrow transplants.
A new study was being done that used cord blood infusions to test whether the stem cells contained within could target damaged parts of the brains of children with Autism.
I emailed Duke within minutes and received a reply at the end of the day that stated the response was overwhelming. I needed to fill out a questionnaire and I'd hear back within 3 months. I was understandably upset by this timeline but submitted the questionnaire and waited.
By the end of the week the wait had grown to over six months.
Every few months I'd email and after close to a year of waiting we received confirmation that our son was officially on the list of children being considered.
By this point the study had completely ended and early results were promising.
Almost 3/4 of participants saw improvement in speech, socialization, and eye contact.
"Results from a Phase I trial were published April 5 in the journal Stem Cells Translational Medicine. The study found that among 25 children ages 2 to 5, more than two-thirds appeared to show improvements in speech, socialization, and eye contact, as reported by parents and assessed by researchers." https://www.dukehealth.org/blog/experimental-cord-blood-therapy-autism-studied
An interview with a family who went through the original trial, along with a video interview with Dr Kurtzberg, who leads the study. https://www.nbcdfw.com/news/health/Duke-Univ-Research-Offers-Hope-For-Autism-Spectrum-Disorder-489254401.html
"Our expanded access program allows children with cerebral palsy, hydrocephalus, autism, and apraxia to receive a cord blood infusion IF they have their own cord blood banked..." https://www.dukehealth.org/pediatric-treatments/cord-blood-transplant
The Expanded Access Protocol criteria are even more strict than the original study. Only children who have their own cord blood banked will be considered. I'd prepared for this eventuality.
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After 18 months of waiting and testing we're at the final phase before the infusion. Matthew turns 5 this week and after over three years of intense therapies he's still greatly behind the average child his age.
Matthew is effectively nonverbal. He has a vocabulary of approximately 10-15 words (examples are Mom, Dada, and Ghee - his name for his Grandma!), but can go days at a time without saying anything.
He also has problems generalizing - the skills he learns at school are not being transferred once he's home. He has an iPad that he keeps on him during the entire school day and he's doing fairly well using it to communicate but he refuses to use it at home. He is not potty trained. He's made amazing progress this year but usually has at least one accident a day. He's made huge strides in feeding himself using utensils but still is not 100% proficient. He's struggled with self harm due to communication frustrations, but those behaviors have decreased greatly this school year.
We're one of the incredibly lucky families who were able to qualify for the Expanded Access Protocol. We'll be hearing from them within about 6 weeks to schedule the procedure.
Unfortunately this procedure is not free. Matthew has enough stem cells to get two infusions, so our cost is going to be doubled.
We live in Connecticut so we have to take a week off work and travel to North Carolina for the infusion. We have to pay for transportation, food, the hotel, all on top of the procedure itself.
Because of this we're trying to raise as much money as we possibly can to help us afford this potentially life altering procedure. (Each infusion alone costs $15,000)
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I just want my son to have every chance possible in life, isn't that what we all want for our kids? Matthew is an amazing child. He's sweet and smart and has the funniest sense of humor.
He loves his trampoline and anything outside - playing in the leaves in the Autumn, the snow in the Winter, and his swing set, sandbox, and everything water related during the Spring and Summer.
He likes watching cartoons, playing with magnet toys and books, and cuddling with his Dad. We can barely keep fruit in the house for more than a day and the summer is his absolutely favorite time of year because it means swimming at his Ghee's house every weekend.
He has such potential and it's not fair to him that something like Autism is preventing him from speaking, learning, and advancing like neurotypcial children his age.
I know we're lucky: we have insurance, his intelligence isn't impaired (as far as we know), he shows us affection, but every day I see him struggle with things other 5 year olds have mastered and it breaks my heart.
We went through so much to get pregnant in the first place - pills and shots and procedures - then dealt with gestational diabetes and preeclampsia.
Once he was born and was healthy I never once complained because he was perfect. We still see him as perfect and all we want is for his life to be as easy as possible. Children today have enough stacked against them, Autism shouldn't have to be one of them.
