After careful consideration we have decided to share James’s inspirational story of survival. It’s hard to believe that someone so small can have shown such a will to survive. He has looked into the face of adversity and has risen up to meet the next challenge. When setback befell his difficult journey; we stayed the course and together, as a family we found our work around.
James Timsar Shahryary was born August 10, 2019 alongside his twin brother Lucas. While being separated from the umbilical chord he suffered a massive stroke that lead to bilateral hemorrhaging (grade 4 in his right hemisphere and grade 2 in his left hemisphere). It wasn’t until 6 hours post delivery that the doctor came to our room and told us to prepare to say goodbye.
This is the absolute worst thing a parent can hear. It’s a moment in time that I can always place myself in. I can feel the room, remember the way the air smelt, the dryness in my nose. I remember arguing with the doctor. I remember the look of horror on my wife’s face.
They finally let us in to see our son around 1 o’clock in the morning. I was on his side and Paige was at his feet. I began to try and tell him a lifetime worth of experiences in the short moments we had, as I did not know if they would be his last. I made a promise to him and told him that all he had to do was survive and that daddy would make everything else right for him.
He kept his end of the bargain, he fought for every second of his life that night. After 9 transfusions, ultrasounds, eeg, ekgs, blood draws-after all that, he finally stabilized around five in the morning. Little did I know this was just the beginning of our journey. After a 4 month stay in the hospital, James was finally able to come home to us and rejoin with his twin brother.
It’s not all promising. There have been countless of time we’ve held James in our arms wondering was that his last breath? Is this the time I need to intervene with CPR? Is this trip to the hospital the last time he will be home?
When James was finally beginning to progress at home, he developed Infantile Spasms which regressed him back to a newborn state. Months of hard work through therapies got erased in a matter of weeks.
But a flat road wouldn’t be one worth traveling. We learned early in the process, “there can’t be good days without the bad one” “there can’t be triumphs with out failures” The achievements of our son may seem small, but the workload behind getting him here is monumentous.
I am starting this go fund me in order to keep my promise to James. There are several treatments not covered by insurance that we would like to explore:
Hyperbaric Oxygen Chamber $2,000 every 20 treatments
Stem Clinic in Germany $24,000
Vision Education: $400 every month
Physical Therapy: $500 every month
Occupational Therapy: $500 every month
Feeding Therapy: $600 every month
No amount is too little and we greatly appreciate any contribution.
We will continue to share James’s journey through this page.
- Linda A Kennedy
- Caitlin Greenman
- Thomas Murphy
- Craig Martin
- Seema Ahmed
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