Racquelle has a NeuroDegenerative Disorder her life expectancy is age 6. We are trying to raise money for her care Please show your support!
After 6 months of planning and talking and 9 months of waiting Racquelle was born April 2, 2009, full term, 40 weeks and a few days, weighing 7lbs 1oz 18 ½ in long. She was Beautiful and very Alert She recognized dad and my voice immediately. She was healthy and passed her new born screenings.
Racquelle was a good baby, mellow and happy with a contagious smile. She Developed normally and met all mile stone markers early. Was pulling to stand and cruise furniture at 9 months old. Her dad and I were convinced she would walk by 12 months. We eagerly waited for the day to come, praised and cheered her on. Elle would attempt to take a few steps without holding on but her balance was very poor and she would always fall. By 12 months old she could still not walk without holding on and was appearing to be more unstable. At first what was thought of a minor delay from doctors turned in to our worst nightmare and something we never expected.
She started therapy at 16 months old, But regression continued she received Developmental Services, Physical Therapy- 2/wk, occupational therapy, speech therapy, and vision services. She was being seen by Neurologists, orthopedic doctors, geneticist and much more. Life become over whelming with appointments, therapy and tests. Blood work, hospital stays, MRIs, CT scans, eye patching, AFOs (walking boots) Cereal casting of her lower legs and the list goes on became routine. All in hopes of finding a diagnosis in hopes of cure.
Racquelle went from Normal Development like talking and three word phrases, walking with help and climbing on furniture to only saying one word and only pulling to stand. She learned 15 baby sign language signs which she eventually lost. She started crawling again and stopped pulling to stand. Eventually she became 100% immobile.
End of October we got the results of her latest MRI. My nightmare began. Racquelle was placed in a Nuero Degenerative Category. With a high possibility of Batten disease (also known as Spielmeyer-Vogt-Sjögren-Batten disease) is a rare, fatal autosomal recessive neurodegenerative disorder that begins in childhood. It is the most common form of a group of disorders called neuronal ceroid lipofuscinosis (or NCLs). We are currently waiting for test results. Her brain is measuring small. Her cerebellum is half the size it should be. Her ventricles are increasing in size. It showed Periventricular leukomalacia (PVL) is a type of brain injury that affects infants. The condition involves the death of small areas of brain tissue around fluid-filled areas called ventricles. The damage creates "holes" in the brain. "Leuko" refers to the brain's white matter and "periventricular" refers to the area around the ventricles. RACQUELLE WILL MOSTLY NOT LIVE PAST SIX. SHE WILL REGRESS UNTIL IN A VEGITATED STATE BEFORE PASSING.
Racquelle as of now spends her time in a reclining high chair with harness due to lack of trunk and head control and a playpen. Her spin is curving. Her legs and feet are always cold to touch. She has limited use of her hands and has a lot of difficulty using them. She has a GI Feeding tube because she can no longer eat or drink orally. She is on oxygen at night and nap time for sleep apnea. She is losing her vision. She is sometimes in pain I believe from cramps in her limbs and headaches. Her heart rate is very irregular. She requires constant care and supervision.
On a better note she loves attention books and music. Her older and younger brothers make her laugh a lot. She is so fun to be around and lights up every life she meets. She is my Blessing and I believe an Angel from God. Her determination smile and look in her eyes is unforgettable.
ANY AND ALL HELP WOULD BE WONDERFUL. I WOULD BE FOREVER THANKFUL. We have one very unreliable vehicle. More bills than money. I cannot afford her unapproved equipment (According to insurance bathing is a luxury and won’t approve her bath seat)(her car seat is covered but denied until I get a vehicle it fits in) I have preplanned a funeral but cannot afford the monthly payments or pay in full when the time sadly comes. Our home needs repairs and we are in jeopardy of losing it. Thank you for your time, Help, donations and or PRAYERS.
The Rinaldi Family and Team Racquelle