**Single Mom Needs a Handicap Van!*
I, like many others, am a single mom and full-time student at Weber State University. Unlike others however, not only do I have four children, but two of them have severe special needs. My sweet girls are quite literally the only two in the world with this syndrome for which it will be named. Identical diagnoses include Epilepsy, Cerebral Palsy, Schizencephaly, Microcephaly, Hydrocephaly and a missing part of their brain. In addition, they have an unheard-of chromosome translocation and are both developmentally delayed to that of a two-month old infant, resulting in an inability to sit, walk, communicate like you and I, or even eat on their own, just to name a few of their many trials. The doctors very much consider both of my girls a miracle and are learning from them. We endure countless hospital visits and admittances while therapy, surgeries, medical equipment and statistics have become the forefront of our lives.
I write and speak as though Bailey is still here on this Earth. Bailey was 13-years-old when she passed away. The photo you see above was taken six months prior to that devastating day. Tabitha is also considered terminal and while every day is a borrowed day, we are doing all we can to live each moment to the fullest.
It is with a heavy but optimistic heart, that you see our plight and are willing to help my little family. We need a new van. One that will prove reliable; that will last years to come; that won’t leave me stranded on the side of I15 awaiting some kind stranger to stop and help me; one where the air conditioning/heater work properly to provide Tabitha relief, keeping her seizures at bay; one with ease of accessibility, working seatbelts and doors; one with room to store medical supplies as we travel back and forth to various medical appointments; one that provides ample room for my boys (who are not your average size teenagers, Gunner stands 6’2” and weighs in at 300 pounds, while Corbin is 5’10” and weighs 180 pounds) so that we can transport them to their many school/sporting events. A new van that can provide happy, positive memories for my family and I as we venture through the next several years.
Blair’s Chevron and Franks Auto are well acquainted with our 2002 15-passenger Ford Econoline, recently declaring it “not worth the money to repair.” (See list below*)
Aside from the financial burden this van brings, it is a constant reminder of Bailey’s death. Despite desperate measures, she died while sitting in the van. My little family watched every moment play out. Bailey’s “spot” is now empty and each time we get into that van, it is a somber, heart-wrenching experience that sucks us dry. I try so hard to remind everyone that it was just her body, not her spirit who left that day. But it doesn’t work for such young kids who have that memory engraved into their minds. Goodness, it doesn’t work for me, as a grown adult.
Tri-County Independent Living will install a new lift with grant funding under Tabitha’s name. (Our current lift is more than 18 years old and under Bailey’s name.) However, to reserve a spot on the waiting list I must have a reliable van that will ensure safe travels for years to come.
Mark Johnson (CAO, Ogden City), Dave Halverson (Halverson Mechanical Inc.), Janis Vause (Executive Director, Ogden School Foundation), Troy Bullard (General Manager, Larry H. Miller Riverdale), Dr. John Allred (Grandview Clinic), Shaun Myers (Myers Mortuary), Craig Malan (GM, Grating Systems Inc.), Don Chantry (Executive Director, Ogden Community Foundation & VP Granite Glass) and myself (amongst others) have made collective efforts in an attempt to secure a van to accommodate my sweet girl and our family. Unfortunately, we have had no success in our endeavor because donations are generally given to foundations as opposed to individuals.
It is a struggle asking you for help. It has been difficult making ends meet. I do not receive child support and because of Tabitha’s medical complexities, I had to take a leave of absence from my job with the school district. Tabitha’s SSI currently keeps us afloat. I am a strong, independent woman who has been doing the best I can for as long as I can remember and am confident that blessings are in store.
I look forward to hearing back from you and for the opportunity that Tabitha and I might have to meet with you in person. Thank you so very much for your time and gracious consideration.
* A list of urgent concerns:
· Wheelchair ramp works intermittently but requires manual operation; cannot be repaired; no longer under warranty; requires updated model for safety reasons; remote wires are split
· Wire shortages
· Benches do not fasten
· Seatbelts do not work
· Seatbelt alert continual
· Sliding door dislodges
· Rear door doesn’t open
· AC holes in compressor
· Heater blows hot in front, cold air in back
· Engine manifold
· Wheel bearings
· Radio does not work
· Regular Stalling
· Over 200K miles