Their youngest has just been diagnosed with Pompe disease.
Pompe disease is an inherited disorder caused by the buildup of a complex sugar called glycogen in the body's cells. The accumulation of glycogen in certain organs and tissues, especially muscles, impairs their ability to function normally.
Only 10 years ago there was no treatment for pompe and children would not be expected to make it to there first birthday,
There is no cure for Pompe but fortunately for us there is a treatment (enzyme replacement therapy) which we hope will start soon. this involves going to Birmingham hospital once every two weeks. We hope that this means our little boy will be able to live life to the full and enjoy his life like we all know he deserves.
Having to travel every two weeks to Birmingham is going to have a financial strain on the family, so I have made this page to try and take some of that strain away.
- Connie Wheten
- Rachel Harrison
- Kell Jenner
- Kirsty Breach
- Daniela Parker
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