Guest post from Lily’s family:
Nearly six years ago, three perfect and beautiful babies were born to our family.
When the triplets were just four months old, Lily contracted a virus known as RSV. She was very fussy when we put her to bed on February 16th, 2006. We woke just a few hours later to a parent’s worst nightmare; we found Lily gray and limp, not breathing, and having seizures. She was rushed to the hospital where she spent the next nine days in a coma fighting for her life, unknown if she would ever breathe on her own again or even live.
Amazingly, Lily was a fighter and defied expectations. However, she suffered massive brain damage during the time she was not breathing. After three more weeks in the hospital, Lily was able to return home to our family and although she was still our precious Lily, she was not the same as before.
Lily has been diagnosed with severe brain damage, quadriplegic cerebral palsy, epilepsy, intestinal failure, cortical visual impairment, hip dysplasia, scoliosis, and severe osteoporosis. She is not able to move or support herself, talk, or eat. Because of her intestinal failure, she receives all her nutrition through an IV permanently placed in her chest.
She has had multiple surgeries in her short life including having feeding tubes placed, IV’s put in her heart, a device put in her chest to try to help her seizures, and two hip surgeries. The two hip surgeries were to hopefully try and fix her dislocated hips. Instead, the surgeries failed and have caused a significant amount of lasting pain for her.
Despite her many obstacles, Lily is an incredible little girl and it’s such a blessing to be her parents. Everyone that meets Lily knows the joy and happiness she brings to every situation; she can make anyone smile. Lily is always laughing, loves having her nails painted, listening to her favorite music, watching TV, and playing with her four siblings. Lily uses a computer with special switches that she activates with her head to communicate with us and tell us funny stories. She’s very excited to be able to go to school this fall, learn new things, and make lots of friends.
Lily is a growing girl, currently 43 pounds, but still very fragile. She has badly broken her femur simply from being lifted out of her wheelchair. For Lily to go anywhere, we have to lift her out of her wheelchair and into her car seat. The car seat hurts her legs and dislocated hips, making her cry and vomit, so she takes heavy medication just to make it through a trip without risking pneumonia or worse. Lily continually needs to see doctors and specialists, so she frequently has to be in the car.
Having a wheelchair van would change Lily’s life. She is a very outgoing and happy child and wants to go to school, be able to go to her siblings sports games and maybe even be able to play sports herself, go shopping with mom and dad, have fun as a family, go play at the park with other kids, just like her brother and sisters do. Just as any child should.
Her wheelchair seat was custom molded to her body to help with her hip and leg issues. It is very comfortable and decreases her pain substantially while she’s in it, so being able to keep her in it while in the car would be life-changing. Your gift will make a huge impact on her life.
Adapted wheelchair vans run between $40,000 and $60,000, depending on the age and mileage. We need something that will seat our whole family safely and reliable enough so that it will last Lily a very long time. Unfortunately, insurance does not cover or assist with adapted vehicles and she doesn’t qualify for the grants we have found.
Although we know that the costs will far exceed $10,000, we didn’t want to set an overwhelming goal and our hope is to actually surpass our goal significantly!
Even if you cannot personally contribute, you can help Lily out by spreading the word about her fundraiser. Post the link to your Facebook, Twitter, or any other social media. Contact us with any ideas you may have to help raise funds for her or even just to tell her you’re rooting for her.
Your generous support is greatly appreciated.