A wheelchair van for Ruby!

Learn more about Ruby!

Meet Ruby Jane Avant! She is 4.5 years old. She lives in Noblesville, IN with her amazing big brother, Liam (6yo) and her parents, Amanda and Mike. She loves music, water, and any toys that light up and make noise! Ruby was diagnosed with a rare condition called Rett Syndrome when she was 21 months.

What is Rett Syndrome and how it affects Ruby:

Rett Syndrome is currently not curable and affects 1 in 10,000 females (and even more rarely, males). It begins to display itself in missed milestones or regression at 6-18 months. Rett Syndrome is regressive and leads to severe impairments, affecting nearly every aspect of life: The ability to talk, walk, eat, and breathe easily. Imagine having the symptoms of Cerebral Palsy, Parkinson's, Autism, Sleep Apnea, Epilepsy, Scoliosis, GI issues, and breath holding all rolled into one little girl or boy?! This is not even an exhaustive list of symptoms; there is more, if you can imagine!

Ruby was born seemingly healthy, but at 6 months, she stopped meeting milestones, leading to our journey to find out what was wrong. For Ruby, Rett Syndrome was not inherited and was just a random mutation that happened when she was conceived! Ruby, unfortunately, has many of these symptoms listed above. She has major GI issues, Epilepsy, cannot walk or talk, and has 13 doctors that follow her for all her issues! Ruby has Parkinsonian shaking at times and seizures. She eats continuously through a tube in her Jejunum (j tube), and due to her Aerophagia (swallowing air/breath holding), she has to have a bag attached to her G tube to vent the air in her tummy or she will be in a lot of pain! Ruby uses a type of eye gaze technology to communicate with us called a Tobii due to her inability to be verbal. She is getting better and better at it by the day because she is very smart and understands what you are saying to her! We are unsure if Ruby will lose more skills, as she is still in a regressive period. Many girls and boys, as they age, lose purposeful hand movement and go from floppy to experiencing dystonia and stiffness that can be painful. Rett Syndrome is life-limiting, but some can live into their 40's! Even with all these issues, she is mostly happy and her laugh and smile bring us so much joy!

How our Fundraiser will work and why a van will be helpful!

Our Family has talked about getting a wheelchair accessible van for a while, but the cost of these types of vans is high, typically in the $70,000 range. We initially wanted to do an event, but this year has been rough and we decided to keep it a bit simpler! The Sheehan Family Foundation is a local foundation that has generously pledged $50,000 to our family to fund a handicap-accessible van! As part of their pledge, we have been tasked with the goal of raising the remaining $20,000 through our own network of friends and family. Once we raise the $20,000, Sheehan will release the $50,000!

An accessible van would not only help us physically but would allow Ruby to be much more comfortable and give her the support she needs while riding in the car. Ruby does not have scoliosis yet, so we are cautious how we position her because she naturally hunches over when she sits due to her low tone. Her current car seat does not accommodate her very well, unfortunately. Her wheelchair helps to keep her back straight and positioned correctly, which provides comfort for her and would be great to use while she travels! Ruby has therapy at Theraplay 3 times/wk that is imperative for her to attend in order to hang onto any skill she still has. She does clinic work, gets to ride a horse there, and loves it! Ruby loves to get out and be around other people, and being able to wheel her into the car would make life so much easier for us!

Another thing we think of is that Ruby is getting bigger every day, and it is tough to put her in and out of a car seat. I ( her Momma) have had 4-foot surgeries, and Mike (her Daddy) has had back surgery in the recent past, and we think of how physically this van would assist us both so much. Ruby will be with us for the rest of her life, and we want to be sure we are physically able to care for her as long as we are able! The earlier we get this van, the easier it will be on us physically! The other concern is that as she gets bigger, it will be harder and harder to keep and find nursing that can accommodate her size. We'd love to have the home and travel equipment that would make care for Ruby easy, making her a more marketable patient to take care of! Our nurses are amazing, and how we function! I am unsure how we would survive if we didn't have them!

With that being said, we need your help! Many people have asked us several times how they can best help us, and we appreciate the love and generous support we have already been given, but if you are still looking to assist us, please consider donating to our fundraiser to raise $20,000 for Ruby’s van! Every dollar raised gets us that much closer to the $50,000 gift from Sheehan Grant!

If you are unable to give at this time, please share this fundraiser with your friends and family. Every little dollar helps! Thank you for your generosity in assisting Ruby and our family to have a better quality of life!

**We would also like to recognize Tendercare Home Care Services and Remax at the Crossing, as they both will be giving generous donations! If you have any home care needs or are buying and selling a house, please consider them and reach out! We have personally used Mike Jones with Remax at the Crossing to sell and buy our home and currently use Tendercare for Ruby. Both are very dedicated to what they do and are wonderful to work with!**

RE/MAX at the Crossing

Tendercare

Also, a special shout out to Theraplay, who we also see weekly and were the reason we even were given a chance to receive this grant money! They are amazing, and they help keep Ruby active and healthy! Please consider them if you are looking for PT/OT/SLP services for your child! They are extra special because they allow their kiddos to ride their horses! Ruby absolutely loves them!

The Children's TherAplay Foundation Inc

No raffles, sweepstakes, giveaways, or promotions are offered in exchange for any donations.