- A
- M
Each year we hope will be better than the next. However, each year could also be our last with our sweet boy, James. 2022 was a reminder of just that.
- James was sick most of the year, in and out of the hospital every 3 months.
- He wasn't able to continue his weekly therapies and we eventually just stuck with intensive therapies.
- We raised $10,000 for stem cells, which unfortunately did more harm than good. We knew there was a chance, but it was a risk we were willing to take. This was James's second round of stem cells. The first round was in Germany and double the cost but we saw great results!
- We ended the year with James getting an mucus plug obstruction in his throat overnight resulting in emergency CPR. We almost lost him that night. Just another reminder that something so little can be catastrophic.
Although there were many lows, there were also some great highlights!
- James was able to attend school and loved being with his fellow friends :)
- After a year-long wait, James got into a month-long intensive at Kennedy Kreiger and did great!
- James completed his third intensive at Tender Ones Therapy services in Georgia
- We learned about an amazing organization called Sweet Julia Grace Foundation. They gifted us with a Hot Tub to use for James's aquatic therapy. Every single time James is in the water, he opens his eyes brightly and gives a little smile. He can finally move his body freely and it is so good for him!
- James's Third Annual Promise Run was a huge hit! It was a beautiful day and the perfect opportunity for the community to meet James and learn more about pediatric stroke.
- After James's last hospital stay in September, we were able to get a Bi-Pap/Ventialor to use at home. This has been crucial in keeping James out of the hospital. In the span of 6 weeks, James got sick with COVID, the Flu, and the common cold. Typically, this would have resulted in a month-long (if not more) hospital stay. However, we finally have the proper equipment at home and were able to keep him out of the hospital!
- After a year-long wait list, James got into a local intensive therapy program called the Hope Center in Richmond, VA which will start in January 2023
Donations
We cannot thank everyone enough who has donated to help James! We couldn't have done this without you. It was a tough year financially for everyone in 2022 and we appreciate any amount that was given.
We hope to raise $15,000 or more for 2023. At this moment we can only afford a selected amount of therapies. Currently, we need funding for the following therapies:
- MNRI - $70/week
- Physical Therapy - $200/week
- Occupational Therapy - $200/week
- Vision Therapy - $100 every 2 weeks
- Feeding Therapy - $150/week
OUR BIG THERAPY FOR 2023 (hopefully!) - MIND EYE INSTITUTE in Chicago
"At the Mind-Eye Institute we understand that interactions between the electrical and biochemical pathways in the brain affect physical, physiological and psychological systems. Patients undergo thorough examination with advanced technology and testing techniques to measure visual performance and visual processing functions and determine whether the visual processing systems are in balance with other sensory systems that require perception of space and time, such as auditory localization ability. With this information, Institute experts can consider how light might be manipulated to positively impact patient brain function. Typically, commercial eyeglass lenses are made as “eyesight enhancers” for central eyesight, but Mind-Eye glasses are designed to address peripheral eyesight and used as medical devices for retinal neuromodulation.
James Story
James Timsar Shahryary was born August 10, 2019 alongside his twin brother Lucas. While being separated from the umbilical cord 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 a.m. I was on his side and Paige was at his feet. I began to try and tell him a lifetime's 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 we 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, EKG, and 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.
No amount is too little and we greatly appreciate any contribution.
We will continue to share James’s journey through this Facebook Page: https://www.facebook.com/ourpromisetojames