We are so excited to share that Ben is starting the next step in his CP journey by receiving a stem cell treatment. This treatment is being performed by a facility in California that has treated a wide range of patients with a variety of medical needs. We are working with them for all of the logistics and are thrilled to know that his brother's cells will potentially be used for his procedure.
His procedure is SCHEDULED for Monday, November 13th!!
The money will be used for all medical procedures, transportation from Oregon to California, lodging and necessities while there. Any additional funds received, will be used for Ben's future needs.
We've been asked about Ben's birth and how his diagnosis was determined. Ben was very healthy and had genetic testing performed while still in utero. Ben's delivery started out as planned, as he was coming to us with a scheduled C-section. Without going into too much detail, there was a complication when the doctor and his assistant attempted to take Ben out. On the first try, they physically could not remove him from my tummy & he was pushed back inside. They did an emergency procedure on me and then brought him out. At some point during this, Ben was without oxygen.
No one knew what had happened at the time of delivery. Ben was missing milestones. Pediatricians were asked what was happening. No one saw the signs. We didn't see the signs, as we didn't know what to look for or what had happened at this point.
A move across the country. New doctor's for our kids and then it happened. His regular peditrician, in our new city, asked if he'd ever been "evaluated". Mike & I looked at each other and had no clue what that even meant. An appointment was made to see a team of professionals. We went in as a regular family and 3 hours later, we came out of the facility with a life changing diagnosis of Cerebral Palsy for Ben. Oh and he needed glasses! A few months later and the first procedure under sedation, a diagnosis of Atrophy of the Cerebellum was determined to be his diagnosis.
Ben was 18 months old when he was diagnosed.
Since then, we've talked to everyone. Gotten as much therapy that insurance will allow per year. Reached out to college's doing studies that he'd be a candidate for. Check out Go Baby Go from OSU!
This is another "step" in Ben's journey. He has 3 walkers, a wheelchair, a few sets of AFO braces and countless bikes and seats to assist him in normal daily activities.
We hope that by sharing his story, you learn more about Ben and our family. If this helps another family seek out a diagnosis, feel comforted that they aren't alone or to see that life is still brilliant and hope is always there if you believe. Thank you for sharing in our little family's journey. ❤️The G-SQUAD!!
GoFundMe is asking who Eileen Dubinett is, so I guess we should introduce his east coast grandma here! We love Grandma Eileen & appreciate all her work in assisting us in organizing his funds and campaign and we're happy to answer any questions, so feel free to ask away!
- Colleen LoMonaco
- Betsy Penson
- Jill Yang
- barbara olinsky
Organizer and beneficiary
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