Dear friends,
We are reaching out for support for our 3-year-old loving, funny, happy, intelligent, outgoing little dude, who has taught our family the meaning of resilience. Although we had already determined at 7 months old that Sammy was falling off the gross motor development chart, it was only at 13 months old, after undergoing an MRI, that Sammy was finally diagnosed with Spastic Diplegic Cerebral Palsy (CP). In essence, CP is a lesion in the brain that affects muscle development, movement and balance. The severity of the condition varies case by case.
From the moment of his diagnosis, it became a painful waiting game to know whether our child would ever walk, as no doctor or therapist would commit to answering that question. The only way forward to ensure the best possible outcome was to throw everything we could muster at the condition as early as possible.
At 13 months old, Sammy could barely roll over, and would not move when placed on the floor. Now, at 3 years old, with a lot of investment and having gone through all of our savings, we have just gotten him to the point of independent walking (at least indoors) – a huge accomplishment for him. However, unlike most children, where once they begin to walk you can breathe a sigh of relief as they will surely continue to improve, in Sammy’s case, his future ability to walk independently is not guaranteed. From one day to the next he can backslide.
Why this is happening:
The lesion with which Sammy was born causes his brain to misfire signals from to his body, telling the muscles in his lower back, hips, legs and feet to tighten and shorten continuously. This causes high spasticity (pain, spasms and rigidity) in the muscles and is most difficult during the growing years where the bones are stretching, as the muscles will have to grow to match bone growth. The affected muscles are usually also much weaker than an average person (about half the strength). The condition also highly affects balance and proprioception (the ability to sense one’s own movement, through sensory receptors in the muscles). All of this severely diminishes his chances of independent walking and doing other daily tasks by himself without risk of injury.
The next steps for Sammy, and the reason we are asking for help:
After researching all possible treatment options for Sammy, we found a stem cell treatment offered by Duke University through the FDA Expanded Access program that uses donor cord blood. This treatment has shown promising results in building new neural connections in children with CP. If successful, it would reduce the spasticity in his muscles and improve his balance. The treatment is still in stage three trials (though it has been proven safe), and so it is not covered by insurance. It is also the only available option that has the potential to permanently change the course of his condition. It is only offered to children up to six years old (the earlier the intervention, the better) because brain development at that stage makes it more likely to respond to the treatment.
The cost of the treatment and related testing to match him with a cord blood donor amounts to $15,600, without cost of travel.
In addition, we are eager to obtain the Neuro-suit (commercially called a PediaSuit). This consists of a vest, shorts and knee pads, connected by resistance band fittings, and was used in his therapies at the 3-week intensive program he undergoes at the Neurological and Physical Abilitation (NAPA) Center (more on the NAPA Center below). When worn, the suit helps align his body correctly, reduces muscle spasticity, and assists in full-body strengthening, which is a core need for Sammy. The suit will also help compliment physical therapies not otherwise available in Puerto Rico, where we live. The cost of the suit and its ancillary required training is $3,000.
Sammy also needs another pair of Ankle Foot Orthotics (AFOs). Cost of the orthotics is $1,600 each time, in spite of medical insurance. (For us this is a recurring cost, requiring updating once or twice a year until his rate of growth slows).
We are also seeking help with travel expenses involved in both the 3-day trip to Duke University in North Carolina for the stem cell treatment, and for the 3-week visit to NAPA Center Denver for his physiotherapy intensive, which includes 3 weeks of car rental and hotel, plus flights for Sammy and his 5-year-old brother Eli, and us, his parents.
What we have done so far, that has gotten him to this point:
Sammy has had a caregiver with him during the day, 5 days a week for 3 years. She works with his stretching, strength training and balance exercises on a daily basis. We have also ensured that Sammy gets regular appointments for physiotherapy, occupational therapy, hippotherapy (horse therapy), and speech therapy. We have acquired medical and physio equipment such as an oscillation plate which we use every day to help relax the muscles and improve balance, a neuromuscular electrical stimulation unit which is used on the affected muscles and feet and helps with proprioception, balance and movement and a walker (which Sammy defiantly refuses to use). We also need to regularly update Sammy’s ankle foot orthotics (AFOs) every 7-8 months as he grows to support his ankles and align the foot correctly.
In addition, for the last two years Sammy has been accepted at a specialized facility for children, the NAPA Center, in Denver. At NAPA Center, Sammy undergoes a 3-week intensive pediatric therapy program designed to propel him forward. This includes 4 hours of therapy per day, 5 days a week for 3 weeks. Two of the daily hours are with Sammy wearing a neuro-suit which releases the tension in the muscles and improves strength. Each visit requires an extended stateside stay, but the treatment has proved to be well worth the time and effort. With each intensive program, we have seen Sammy leap forward. After his first visit, Sammy was able to begin standing; the second visit saw him start walking independently with more confidence, if still cautiously.
Why we push forward:
Sammy has a strong, fighting spirit. Early intervention has been key. He walks because he has decided he wants to walk independently. He takes the physiotherapy, which involves a lot discomfort and stretching, in stride. Sammy will push through every minute of exercise thrown at him, which is one of the main reasons he has been able to get to where he is. And so, we do everything we can to help him achieve his goal of being independent.
However, in spite of how far he has come, the persistent high degree of spasticity threatens to push Sammy backwards. We cannot afford to stop any interventions as any gaps in treatment threaten the gains Sammy has made so far. This is aside from corrective surgeries that we have been told Sammy will likely need at some point during his childhood.
As parents, everything we do is to ensure the brightest possible future for our children. There are many ongoing and unforeseen expenses that we will continue to manage for Sammy’s care, as his development and needs change over time.
We cannot express our gratitude enough for any support we receive. Thank you from the bottom of our hearts.