Project Description

Child’s Name: Amelie B

Child’s Condition: Amelie was delivered via C section at 38weeks gestation. She required a feeding tube through her nose straight from birth to correct her sugars. She also had heart scans and was monitored closely due to a genetic condition being picked up on a 6month neonatal scan. That condition is MPPH (Megalencephaly-Polymicrogyria-Polydactyly-Hydrocephalus syndrome) and Amelie was formally diagnosed with it at 2yr old.

Attended Heel & Toe Since: 2017

Receives: Massage & Movement Therapy

Sponsor Amelie B

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Donation Total: £5 One Time

Amelie’s Story

MPPH syndrome is a disorder characterized by the presence of multiple birth defects and developmental delay. Classic signs and symptoms include polymicrogyria, megalencephaly, seizures, polydactyly, and hydrocephalus. Amelie is also severely partially sighted and non-verbal. She requires constant around the clock care to meet her every day needs.

Amelie loves her hydrobath; loves listening to music; eating yoghurt; and being taken for long walks in the fresh air. She dislikes being made to do anything she doesn’t feel in the mood to do, she can be quite stubborn but otherwise is a happy little girl.

Amelie attends Heel and Toe for free massage and movement sessions as well as for physiotherapy.

Amelie has recently taken her very first steps on an amazing machine called the Innowalk. We are currently fundraising to purchase this piece of equipment which will be adjustable for all children’s ages and heights.  The cost for just one of these machine’s is £35,000.

Can you help us fundraise or donate?

Sponsor Amelie B