On Teddy’s 6th birthday, for those who would want to buy him a gift, we’re asking for donations to SDS UK instead.

As his birthday is so close to Christmas (& he’s a very lucky boy so doesn’t need any new toys, clothes etc), a donation to SDS UK would be much more beneficial to him.

We can assure you that he won’t go without!

As most of you know Teddy was diagnosed with SDS at 8 months old.

Although he’s doing amazing well in everything right now, we don’t know what he’s going to have to face in the future. SDS UK supports research into finding a treatment for SDS, which ultimately is everything we could hope for Teddy.

Shwachman Diamond Syndrome is a rare, inherited disorder in which the pancreas and bone marrow do not work the way they should. Symptoms include pancreatic insufficiency meaning problems digesting food, a low number of white blood cells (reduced immune system), skeletal abnormalities and short stature.

SDS means Teddy has a higher risk of developing blood cancer, acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS).

There are approximately 60 known patients in the UK and we estimate there are 1,500-2,000 patients in US and Europe.