Samuel from Worcestershire, England

Hello there!

This is our wonderful Samuel from Worcestershire, England who is 15 months old. Sam has been diagnosed with Infantile Pompe Disease two months ago and receiving his Enzyme Replacement Therapy at Birmingham Children's Hospital as an inpatient. Due to the late diagnosis, his Pompe is irreversibly progressed in his skeletal muscles, breathing and swallowing but his heart size has improved slightly since his treatment began. We are yet to go home since his diagnosis and unsure when that will be, but we can't wait to make up for lost time over the covid lockdowns and make some new, precious memories with Sam, our family and friends during what's left of his short life. Wishing every parent going through similar circumstances all the love in the world, as we understand the heartbreak and devastation you must be feeling. 

Graham, Harriette and Little Samuel x x x

Happy IPD from an English Arboretum

Happy International Pompe day from the Sir Harold Hillier Gardens and arboretum in the UK. (near Romsey Hampshire)

Comprising 72 hectares accommodating over 42,000 trees and shrubs in about 12,000 taxa, notably a collection of oaks, camellia, magnolia and rhododendron.

A big hello to all my friends in the Pompe Community, in the UK and abroad . I will never forget you all and the support I have received over the years.

Many of you I will have met at conferences or at meetings.

A big thank you also to all the medics involved in the Pompe story which we joined in 1991 before any treatment options available.

Your dedication and expertise lead to treatment today and will in time lead to future developments.

Together we are strong !

Barbara Muir
Trustee/ and proud to be the Mum of Jamie Muir.
Pompe Support Network
Pompe.uk

Living life

Life with a progressive disease is possible. A positive attitude, support from family and friends, the Neuromuscular Centre in Cheshire, supportive Consultants and the right equipment. It is what you can do that counts ... Pompe or not! 😊

Andrea Duckworth, aged 51, England 

Cheerful and resilient

Having lived with Pompe in our lives for nearly 30 years; we have always been proud and grateful to have a son who has constantly moved on; taking many of life's challenges in his stride. This is the text of a school announcement at the age of 15:

The recipient of this year's award is a young person who has impressed everybody around them by their chearfulness and resilience in the face of illness and continual hospital treatment from a young age.

Coming to Bohunt School in Year Seven, concerns were expressed about how this pupil would cope in such a large and jostling environment. No one need have worried. This young person slotted right in, taking a full, active and independent part in school life and becoming a popular and respected member of the tutor group.

Last year, this pupil underwent a serious spinal operation, resulting in a long stay in hospital. On top of this, additional medical complications have meant regular treatment in The Netherlands and London, to test a ground-breaking new drug that could help others in a similar situation.

Throughout these difficult times, this person has never been anything other than cheerful and resilient. Never have they made an issue of their medical problems, nor used them as a reason for school work to suffer. Rather, they have faced up to daily life with unfailing cheerfulness, politeness and courage, supported by the tutor group and being a caring and supporting friend themselves.

In recognition of their courage and zest for life and school, I am proud and delighted to announce that this year's Rosemary Kermode Trophy is awarded to Jamie Muir of Year 10s.

And we remain very proud!

Allan and Barbara Muir, UK

My Family

My Family keeps me strong

Andrew Jackson, England, Aged 50