3 months before my daughter was born, i received a phone call from Connecticut asking if i were interested in adopting a little girl. When she was born, I was told that she would not survive. They gave her 6 hours at most. When she pulled through they gave her 6 weeks. Then months at the most. 14 years later she’s fighting and thriving! She’s the only person to survive with her combined diagnosis, and she’s not done changing the world yet!
My child has a rare severe form of OI. Her genetic type is rare enough that it is not yet numbered. Only one other person has been diagnosed with this type, but passed away at 19 months of age. She also has a secondary form (type 16) that no one has survived past birth. Because of her severity, every transfer is a risk for a broken bone if not done safely. Even then she often breaks. She broke more than 1000 times by age 5. She has suffered from low oxygen multiple times in life and has developmental delays as a result. She also has many secondary issues resulting from her OI such as respiratory issues, slowly losing vision, long bone deformities, and is now developing spinal rotational collapse. She also has a depleted immune system and ACD secondary to chronic bone fractures taxing her body. She gets a series of life sustaining infusions every 8 weeks in Randall Children’s Hospital. Through it all she loves life.
What truly keeps my child going is the ability to get out and be a part of the world. She loves the Mall, the Zoo, the Hatchery, OMSI, children’s theatre, the beach, Disney, fishing, long hikes, and more. she loves helping at the Dairy, and at a friends farm. She enjoys 4h and Church, and just loves getting outside. Anything outdoors and accessible brings smiles. While her extreme anxiety hinders her social expression, she loves people watching!
We currently have a 21 year old lift van that is in need of serious repair. It also is too small to easily take a power chair, a Rodeo stroller, a manual chair, a scooter orvwalker, and three people. Even when it is just my daughter and I, we need to haul three mobility devices. She always needs a stroller for emergency backup because if she breaks while we are out she cannot drive her power chair. My chair must also fit into the equation.
We are looking for a van that has front or all wheel drive due to the weather we encounter and the frequent need to access medical care. We cannot have drop floor due to the clearance needed to get into our driveway. We have a minimum of 5 appointments on a typical week right now, plus any other trips we need such as groceries, medication, outings, school, etc. Good mileage would be a plus!
CIIS will cover most modifications if we can get a vehicle. They won’t cover hand controls or a swivel drivers seat, as those are for me not my daughter. They will cover lift, tie downs, her swivel seat base, and her shoulder seatbelt.
I know our situation is unique being two wheelchair users. We love life, love giving back, love supporting others. God and faith carry us through the ups and downs, which makes life a blessing each and every day.
In addition to regular transportation, I am the one transporting my daughter to/from school, field trips, etc because the local district cannot transport her. She also attends 1 class a week at a private school, so I transport her there as well. This social opportunity has been invaluable for Bryten.
Thank you for considering us. Our van is a blessing because it works, but is costing us hundreds of dollars a month in repairs. The lift is tired and they no longer make mini van lifts. The slider is breaking off track, the engine is complaining, and while it will work as an emergency back up vehicle, it’s lost its reputation as a “reliable” van. Its time to upgrade. We’ve gotten 21 good years out of this one.