Written by Ben’s mom, Rebecca
Benjamyn is now almost 2 years old. We have been down so many crazy paths with him and his multiple diagnoses. Benjamyn is a spunky, smart, sweet little brown-eyed boy. He often keeps us on our toes and busy with appointments.
Ben is legally blind due to ONH, Optical Nerve Hypoplasia. He currently sees neurology, ophthalmology, cardiology, endocrinology, ENT, Genetics, and Orthopedic for his spine, joints, feet, and hands. The list goes on and on. Benjamyn currently does weekly speech, occupational, and physical therapy along with a specialist’s appointment at least once a week.
Benjamyn is the light of our family. Every one of his 6 siblings plays a significant role in his life. Whether it’s sensory play, tossing a ball back and forth, or mimicking what Ben does, his siblings all have their special moments with him.
The obstacles that Ben faces are astounding. Ben is currently undiagnosed, and he is the first in the world to be Benjamyn. Ben is literally breaking ground with his medical conditions. His DNA is currently in Mayo Clinics Cryostorage and will continue to be analyzed yearly until a link or similar case is found.
Ben shows such strength and courage by not allowing his defects to slow him down. Throughout his journey, we’ve been offered surgeries, medically adaptive equipment, and such to ease his struggles all to no avail.
We, as an informed family, have decided to let Ben be… Ben. We will not alter a creation made by our Devine God. We are constantly adapting to BEN and HIS needs. It seems as if every day he has a new diagnosis or new struggles, but he doesn’t let that stop him.
I’ve often wondered what his quality of life will be. How will his medical conditions impact our other 6 children and our marriage? But through it all and all my questions, Ben has brought us together more than I could’ve ever imagined.
Ben’s struggles aren’t just his. They are his family’s, his doctors’, his teachers’, his therapist’s, and even his case managers’. We don’t get the option to throw in the towel when it comes to Ben. We know that someday someone will be “just like him” and this journey we’ve traveled won’t be for nothing. The days are long and sometimes frustrating and exhausting. But those big brown eyes, his soft little tufts of hair, and his little grin make every single tear we shed worth the struggle.
Neither of us is currently working and that is a choice we made as a family. My husband and I have medical conditions on top of Bens, so working isn’t really an option for our family until Ben’s diagnosis “level out”.
Our family is a family of givers and will literally give anyone the shirts off our backs. Financially these last 2 years have been hard, not only because of covid but because of all of Ben’s medical appointments. We haven’t missed an appointment yet! And we HAVE ALOT!!!!!! We’re hoping Ben can start ABA Strid in Des Moines this fall.
I plan to stay home with the other kids while Ben attends ABA in Des Moines 3 days a week. We’re currently looking at finances and options on how to make this possible. Ben and his father would most likely be staying at a hotel or an air BnB 3 days a week. While Ben is at ABA, his dad, Austin, plans to do work such as Door Dash, Uber Eats, etc. He needs something flexible while earning enough money to cover their expenses while in Des Moines weekly.
We’re set to see Mayo Clinic in Rochester, MN in June for our 2nd evaluation. Some of our appointments have been via zoom which is a blessing but this visit to Mayo is extremely important as we are leaning towards a more definite diagnosis of Mosaic Klinefelters. We’re looking forward to the next chapter in Ben’s adventure.
We are always looking for new ways to adapt to Ben and make things easier on the entire family. Financially we could always use assistance, as Ben’s medical needs will be ongoing.
Our Hearts of Hope family has financially helped us meet Ben’s medical needs when requested. I, myself, have had some very deep conversations with Tony’s brother in regards to how I could emotionally handle the burden of this diagnosis for my son. There were many dark days in the beginning when I struggled to find hope. But Hearts of Hope always found a way to bring back my faith in humanity, even during the pandemic. We carry much love in our hearts for the Hearts of Hope families and their team supporting US during our time of need.
Hearts of Hope Network is here to help Benjamyn’s family. Because of generous donations and support, we have sent Tony’s Hugs packages to each member of this family and are here to help throughout their journey.
Benjamyn’s family is also fundraising on their own. While we are here to help, the cost of caring for a critically ill child can be very extreme. Many times, their parents have to take off work or quit working to care for their child. We thank you for supporting Hearts of Hope Network through donations, and if you would like to help support this family even further, please consider following their support links below.
Here at Hearts of Hope Network, every case is different and unique in its own way. We want to always be here to stand with these families in their time of need and beyond. Every donation goes toward supporting these families, and every donor is a part of showing these families that they are NOT alone.
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If you are caring for a critically ill child, we want to be with you in your time of need. Click here to apply for aid.
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