Over the past few months, the Foundation has received a number requests for support from a number of organisations, small charities and independent cases, and whilst we would like to be able to help them all, we must choose carefully to align ourselves with causes that reflect the values and purpose of the ALF.
Therefore it gives us great pleasure to inform all of our supporters that the ALF has agreed to assist Penelope Martin, an amazing little girl from Westcliff who suffers from an extremely rare chromosome disorder called 17q 21.31-21.32 micro-duplication.
Penelope’s disorder is so rare that it doesn’t have an official name, and she is one of only 7 people in the world diagnosed with the condition – she is also Great Ormond Street’s first case.
Given the rarity of the condition, it’s hard for anyone to give any indication of what her future holds, but currently she is unable to stand alone as her ankles won’t support her and as she has not long been crawling, it’s becoming harder for her to get out and about like every child should.
Therefore, the Foundation is proud to announce that on Thursday 21st May, Penelope took delivery of a specially designed trike, that will help her build up the muscles in her ankles and allow her greater independence.
We are very proud to help causes such as Penelope’s in Aaron’s honour, and we look forward to seeing her development in the future.
Thank you,
The Trustees