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New Therapies, New Hopes

New Therapies, New Hopes

After four years of waiting, my son is eligible for stem cell therapy

Before my son was born, I never gave a thought to stem cell therapy. I knew what it was because an aunt had undergone an infusion for her rheumatoid inflamed knee, but I really had no clue what the therapy was meant to do, or why it was controversial at the time.

Shortly after my son came into the world, the topic of stem cell usage became very important. Henry suffered a brain injury sometime during the birth process, and as a result, has dyskinetic cerebral palsy and hypotonia in his torso. Doctors at his birth told us he would have global delays in physical abilities. The combination of low muscle tone and poor brain-muscle communication have brought him a host of difficulties: gross motor movements, using his hands without them closing uncontrollably, being able to speak intelligibly – these are some of the major issues he is overcoming. He still has a long way to go.

What does this have to do with stem cell therapy? Good question.

I'm a firm believer in the typical therapies presented to us. Henry has been in physical and occupational therapy since he was two weeks old. He participated from birth to age three early childhood education group for two years. He is now supported by therapists in his school for PT, OT, and speech services. He has made amazing strides! I'm pleased that Henry's persistence has not been diminished over time, at all. If he wants to do something, he's going to figure out how he can.

So, we've done all the therapies we could get our hands-on, and Henry has participated beautifully. But could we be doing more or something else to help him develop? This is where the stem cells come in.

In late 2015, we found out about a stem cell study being done at a renowned institution in the U.S. We immediately contacted them and provided enough medical history to get Henry on the list for consideration. Months passed. A year. Eighteen months. We kept contacting the study coordinator but got no further in the process of them actually admitting our son.

In the meantime, we kept trucking along to therapies, week after week, month after month. Two years turned into three, and still, we had no idea if Henry would get the chance for stem cell infusion. We had banked his sister's cord blood when she was born and knew we could use it. All we needed was a green light to go ahead.

I had pretty much given up on hearing back from the university. And then, four years into the waiting, I finally did. My son is not eligible for the study, but he can still have the infusion performed! His appointment has been scheduled and he is ready to go.

And now, we wait again. But this time I am waiting with the hope of something that seems closer, more real than before. Please check back for updates on this exciting new time in our lives!

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Victoria Tkachuk

Meet Our Blogger

I'm from the Midwest region of the United States and I have four children, three neurotypical daughters and one son with dyskinetic cerebral palsy. My goal in writing is to connect special needs parents and make inclusion a reality in all our lives.

View Victoria’s Profile

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