On September 21 2015, we received the heartbreaking news that our sweet little girl Lilly has Rett Syndrome, an genetic disorder caused by a random mutation of the X chromosome - MECP2 gene. The disease causes rapid developmental regression in girls which robs them of almost everything. There speech, fine motor skills, purposeful use of their hands, and the ability to walk. It is described as Cerebral Palsy, Parkinson's Disease, Epilepsy, and Severe Apraxia. It may also lead to scoliosis, heart arrhythmia, breathing difficulties, and a host of other symptoms as these girls progress through life. In simple terms, Lilly is trapped in a body that she cannot control.
We have been doing everything in our power to give her every chance at the best quality of life and care. We designed a comprehensive protocol which includes strict dietary requirements, multiple nutritional supplements, and daily therapy sessions designed to hopefully recover skills which the disorder has stolen, and to battle to maintain the abilities she has. Lilly is still walking and we are extremely thankful as many Rett girls do not. She has lost most of her ability to speak, and requires 24/7 care.
This protocol will be a part of her everyday life. It is costly, and will continue into Lillys adulthood. Expenses for organic dietary requirements, supplements, supportive braces, adaptive therapy equipment, car modifications, home modifications, and special needs care givers often exceed multiple $1000s per month or more. Many of her doctor/therapist consultations are not covered by insurance. These are necessary expenses to give her the best possible chance at a quality childhood and adult life. Rett Syndrome is a daily battle, and a lifetime challenge. We will continue to pray for a cure everyday, We believe it is coming! But until then your prayers and any help are appreciated more than we can ever express.
This is Lillys Story
- Josie Clark- Trippodo
- Keith & Debbie Gough
- Kimberly Brucato-Reilly
- Trudy Menzzentto
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