Send Imogen to the Myhre Conference-Philadelphia
Donation protected
Hi,
I’m Nicki and godmother to the bravest little girl I know!
My beautiful Imogen is 12 years old and is as sassy as they come!
Obsessed with Tik Tok, dance and swimming and my only wish is that she lives a long and healthy life.
At just 2 years old, Imogen was diagnosed with Myhre Syndrome. An extremely rare progressive genetic disorder with life limitations. At the time she was diagnosed, she was the only child known in the UK with Myhre. Now 10 years on since her diagnosis we have a very small UK community of around 18 families and World wide community stretching from Australia to the US. Myhre Syndrome affects around 1 in around 7 billion people- she is pretty unique!!
Her resilience to Myhre and the numerous hospital admissions and specialist appointments just shows how much of a fighter she really is. Imogen struggles daily with Myhre as it affects her whole body not only physically but mentally too and we don't know what her future holds. We have already had so many Myhre Angels gain their wings before their time and it breaks my heart.
This July, the Myhre Syndrome Foundation is hosting its first ever, in person Myhre Family Conference at Philadelphia University Hospital. This will be a 2 day event inviting families of those with Myhre Syndrome from around the world to take part in seminars hosted by the specialists and includes a 1 to 1 with a Myhre multidisciplinary medical team. They will be offering an expert advice which will be invaluable to Imogen's health as we move forward. The Myhre Conference really could change Imogen's life and for this we are asking for donations to help us fund this once in a lifetime opportunity.
So on Saturday 6th April 2024, I have decided to climb Snowdon to raise the funds, along with Imogen’s mum, Stacey (my best friend), Imogen’s auntie, Kaylee, along with other family and friends. We have a wonderful group of volunteers who will be supporting along the way. Along with our Myhre sass queen who will be waiting for our return.
Please donate what you can and share the page.
Thank you from the bottom of our hearts x x
Organizer
Nicki Porter
Organizer
England