Charlies Diamond Golf Day

Charlie's Diamond Golf Day & donation page has been organised to raise money and support Charlie (Bass/Walker) and family as they prepare for Charlie's bone marrow transplant this coming January 2022.

 

Charlie was diagnosed with Shwachman-Diamond Syndrome. This is a rare genetic disease which affects the pancreas, bone marrow and skeletal system. There is currently no cure for Shwachman-Diamond Syndrome.

 

Having this syndrome means that Charlie’s blood counts (red blood cells, white blood cells and platelets) are very low and require blood transfusions every week to maintain a safe level. Whilst red and platelets can be maintained with transfusions. White cells cannot.

 

Charlie’s white cells are pretty much non-existent and have not improved much with medication.

 

What this means for Charlie is that whilst other children can go out, meet everyone, play with other children and get out in the world and get messy. Charlie has to be careful. Limiting contact with lots of people especially children. Keeping hygiene standards and taking precautions when people are sick. Charlie is monitored closely for any temperatures that could indicate an infection and has to be dealt with by way of immediate hospital admission.

 

As well as Charlie’s blood counts being low her pancreas is slightly smaller than normal which means her body does not make enough enzymes to process fats. Charlie needs medication every day and prior to any food containing fat.

 

On top of this medication she also needs medication to help her body fight infections. These are drugs to try and help her own bone marrow stimulate platelet production coupled with injections three times a week to help her white blood cell levels.

 

Charlie needs a little help with a feeding tube as she cannot finish all her feeds

 

Charlie will be undergoing multiple treatments which include a bone marrow transplant. While there are several matches confirmed they may not be successful and this will see her in isolation for a minimum of 3 months before knowing how the treatments have worked.

 

All proceeds and donations will go directly to the family to help in the coming months with time away from work, accommodation needs and anything they may need along this journey.