Pennys Journey
Donation protected
On September 18th 2018, Penny was diagnosed with a very rare metabolic disease called Sanfilippo Syndrome. Penny had Global Development delays, and from 6 months old she has developed differently to other children. She has had a lot of ENT problems and also has partial hearing loss, which is all part of Sanfilippo. She has undergone surgery to remove her adenoids twice, and grommits to help her ears.
Despite all of this, Penny is a very happy little girl, she is super active and has a love for food, and people.
At the minute, there is no cure. Sanfilippo is a progressive brain disorder, caused by just one missing enzyme. The disease will begin shutting down critical areas needed to function. As degeneration progresses, Penny will lose the ability to talk, swallow and walk. At the moment, children with Sanfilippo live until mid to late teens, there are lots of clinical trials happening, hopefully one day this will be much longer.
Right now, Penny is full of life and enjoying her new school, and spending time with her big brothers and family.
We would like to raise funds to give Kelly, Andrew, Harry and Tyler the opportunity to make precious amazing memories with Penny.
Kelly has been amazing, the strongest person I know! taking each day as it comes, and fighting for Penny to give her the best life possible!
The support will mean so much to the family, you can imagine how devastating it must be to be told your child has a terminal illness.
Kelly would love to take Penny to Disneyland America, I know that between us, we can do it!
Funding would also go towards a special sensory room at home for Penny, as she will need a downstairs bedroom with a bathroom.
Thank you for taking the time to read this, and thank you for your support
xxx
Despite all of this, Penny is a very happy little girl, she is super active and has a love for food, and people.
At the minute, there is no cure. Sanfilippo is a progressive brain disorder, caused by just one missing enzyme. The disease will begin shutting down critical areas needed to function. As degeneration progresses, Penny will lose the ability to talk, swallow and walk. At the moment, children with Sanfilippo live until mid to late teens, there are lots of clinical trials happening, hopefully one day this will be much longer.
Right now, Penny is full of life and enjoying her new school, and spending time with her big brothers and family.
We would like to raise funds to give Kelly, Andrew, Harry and Tyler the opportunity to make precious amazing memories with Penny.
Kelly has been amazing, the strongest person I know! taking each day as it comes, and fighting for Penny to give her the best life possible!
The support will mean so much to the family, you can imagine how devastating it must be to be told your child has a terminal illness.
Kelly would love to take Penny to Disneyland America, I know that between us, we can do it!
Funding would also go towards a special sensory room at home for Penny, as she will need a downstairs bedroom with a bathroom.
Thank you for taking the time to read this, and thank you for your support
xxx
Organiser and beneficiary
Karen Brain
Organiser
England
Kelly Mills
Beneficiary