Treatments for Maddie Proctor

Madeleine has been diagnosed with a non inherited, natural spontaneous genetic deletion in her genetic code that results in Rett syndrome. Her specific deletion is c.1157_1197 del (p.Leu386 Hisfs*5) and is located in the C terminal of the mecp2 protein of the bottom part of her X chromosome.

Madeleine is atypical with the chance of preserved hand movement and speech but we don’t know what that will look like but speech therapy is vital in the aid to combat non verbal apraxia.

Madeleine does not walk, yet but will take up to 100 steps in her gait trainer that has been striped down to a basic walker. She can stand independent for 5 seconds at a time- the gait trainer is decorated to look like a jeep for intrinsic motivation purposes.

We are currently ordering a wheelchair for days when she prefers to roll instead of walking in her gait trainer due to dystonia.

Madeleine is currently enrolled in a case study with NDT and participates in co-intensive sessions with OT and PT as well as intensive PT, speech therapy and feeding therapy but all of this cost quite a bit.

Her intensive therapies- that help her fight dystonia, scoliosis, gut issues and get her walking faster- allowing for more independence is vital to her fight with this nasty disease- are NOT covered by insurance- we have to pay cash for these treatments- her regular therapies are covered by insurance and those copays run around $7000 a year but do not give Madeleine what she needs to fight, stay healthy, walk and gain independence.

For one session of intensive occupational therapy the cost is $175 an hour cash at 2 hours a day- total of $350 for the day- these sessions are two weeks long- once a quarter and supplemented by standard OT.

Intensive physical therapy is $110 an hour at 2 hours a day for $220 a day, five days a week for two weeks every two months and supplemented by standard physical therapy-

We are selling shirts to keep Maddie’s intensive therapies going and get her walking faster!