Pipers wishes

On the 15th of March 2022, Piper was diagnosed with Riboflavin Transporter disease, formally known as BVVL. This is a debilitating, life shortening neuro dengenerative genetic disorder. The loss of motor neurons affected in RTD leads to progressive weakness and wasting in muscles, including those muscles used for movement, breathing and swallowing. The loss of sensory neurons in RTD can lead to issues including hearing loss, vision loss and Gait ataxia. There is no cure for RTD and only treatment is life long high doeses of Riboflavin. This diagnosis has devastated the family so myself ( Pipers aunty) and Sandra ( a very close family friend & very special to Piper) are raising money to give to Piper for days out and to make precious memories whilst her symptoms allow her to as they do not know how much time she has left to do so.