Wheelchair Van for Ariella Botts
Ariella “Ella” Botts is a precious, beautiful and blessed four-year-old girl who dreams of being a doctor, mail carrier and construction worker all at the same time. Ella was born with a rare neuro-muscular disease called Nemaline Rod Myopathy. Basically, every muscle in Ariella’s body that is attached to a bone is extremely weak. Which means that even basics like, breathing, talking, eating and moving take every ounce of energy she has. Early respiratory complications filled Ella’s lungs with mucous. It took weeks for the miracle workers in the hospital to clear her lungs. Ella went home with an breathing mask and ventilator along with lots of other monitoring and feeding equipment. Since then Ariella has needed nursing care most of the day to support just about every function of daily life.
On December 26, 2015 Ella was taken by ambulance to Yale Children's Hospital with a severe respiratory illness that took nearly all she had to survive. Acute respiratory failure caused her to be intubated three different times to save her life. Ariella lost 15 lbs and all the muscle we worked so hard to build, she could not even hold her head up never mind walk or play like she used to. In addition she has a tracheostomy, a breathing tube in her neck, and yet once again the little miracle warrior kept fighting. Ariella is only 4 years-old but she has already spent almost a quarter of her life in a hospital bed.
Ariella tires much more easily than before so she requires a wheelchair and vent to go with her everywhere. Going anywhere means spending 15-20 minutes dismantling her manual wheelchair, loading her into a car seat and filling the backseat with her lifesaving equipment. Ella has a power chair that helps her to move more freely but we have no way to transport her in that chair. We have been researching a wheelchair van, and have learned that only the Dodge ProMaster Ram will give us the ability to not only transport Ella in her power chair, and also include the rest of our family - both parents, grandma and her two brothers, along with Ella’s nurse.
We both work full time to support our family of six and take great pride in holding our own for the most part. We had no intention of asking for help, but lately family and friends have encouraged us to reach out because Medicaid transport has left Ariella stranded at the hospital for hours more than once already and in the end what she needs is most important.
We have no idea how long we will be blessed with Ariella, but we hope to make every day as full and as safe as possible. A wheelchair van will allow us to visit parks, doctor’s appts, physical therapy, family functions, museums and anywhere else a typical family would visit. Most importantly it will let us have easy access to her equipment to help her when breathing becomes difficult on the road. When I asked Ariella if she would like a van like the one we went to see, her response was perfect…”yes mommy I would love it, then we can pick up my friend Helaina and go to Massachusetts to see my nana and poppy and all my cousins!” Simple wishes from a little miracle.
Along with financial support we seek your continued prayers. The winter cold and flu season is coming quickly and Ariella has just barely gotten through recovery from last winter. Please help us pray that Ariella would be spared any major illnesses this winter and be granted her first healthy Christmas ever. We thank you and are incredibly grateful for every prayer, every sacrifice and offer to help, every share and referral that you can offer!
Learn more about Ariella and her journey on her blog at
www.iammtc.blogspot.com
