UPDATE! (08/20/17): Colleen had her first stem cell treatment on Thursday. We could not be more thankful for everyone who helped make this possible. A few people have asked if our YouCaring is still open to accepting donations, and YES! It is our hope that if we see progress, we can have multiple treatments done. Some people go again in 2-3 months. Others wait 6 months to a year. We would also like to purchase a microcurrent machine which would be programmed to Colleen's needs specifically. Thank you!!
As well as you can prepare yourself for becoming a parent, those hopes, dreams, and fears can all be thrown out the window in an instant and replaced with uncertainty and a desperate need to get your child the best possible care that you can.
On October 30, 2011, Colleen came into this world and was brought to another hospital's NICU. She needed an emergency blood transfusion, had a subdural hematoma (bleeding on the brain) and had had 2 large seizures. After many ups and downs, she was able to come home on November 19th with Keppra, phenobarbital, and digoxin. (2 seizure medications and 1 for her heart.) I lost count of how many times we asked, but no one could tell us the eventual outcome of everything Colleen faced the first few weeks of life.
As a baby, I thought Colleen was progressing normally, as I had seen her do things like children of her own age. But, like many things, we see her do something and it will be a long time before we see it again. She started receiving Early Intervention at a few months of age, starting with physical therapy, then adding other services as needed, like speech, and a teacher of the deaf. It was still unknown how Colleen would progress and just what she would be capable of.
Colleen is now a 5-year-old sassy, stubborn, loving cuddle bug, who is non-verbal, but just has that special way of letting you know how it is. She absolutely loves music; she will stop what she’s doing to listen and start bopping along, even when there is no music to be heard! She is a strong fighter, and through it all, she still has the most amazing smile to show the world.
Stem Cell Therapy
Colleen was diagnosed with level 2 cerebral palsy in January 2013. She has "silent seizures" (meaning we can't really see them) tonic clonic, and myotonic jerks. Other than birth, she had had 1 seizure in 2013, but in 2016, they dramatically increased. The myotinic jerks are daily and unfortunately, her medication does not control them. Colleen also has bilateral hearing loss and possible cortical visual impairment. Her neurologist at her last appointment showed us her MRI and explained the damaged area (she has scar tissue, essentially, right and left frontal lobe, as well as an area of a stroke.) We were told that those damaged neurons cannot regrow. While I knew this, it was a hard pill to swallow. I held out hope that in some way, her brain would get around this damaged area and she would not have any more seizures.
Google searching quickly followed this trip, where I saw there were some studies on regrowing neurons after a traumatic brain injury. But nothing that would be beneficial to her in the foreseeable future.
Then, someone I follow on social media posted about stem cell therapy, and I had to know more. “Stem cells can develop into specific types of brain cells, replacing those which are damaged. Theories suggest that stem cells placed into a person’s body can stimulate a response that mends damaged cells or that the stem cells can be used to create new brain cells in a lab to replace the damaged cells.” Source: https://www.cerebralpalsyguide.com/treatment/cure/
We want to be able to do anything within our power to help Colleen. I’ve ready so many stories of children after receiving stem cell therapy, and it has given me so much hope. There is a doctor in California who has been treating with stem cells, and I want to bring Colleen to a trusted doctor. Since insurance does not cover this procedure, it is our hope to raise money to help cover the cost.
Any amount donated will do directly to Colleen's stem cell treatment. We appreciate any and all donations for our amazing little girl. Thank you for taking the time to read about Colleen’s story. Any amount helps us get one step closer to receiving treatment!
If you would like to make a direct donation, you can send to:
400 Hinsdale Rd
Camillus, NY 13031