All About Joe

Connie’s younger brother Joe (born 9 November 2010) is much more active and sporty than she was and less academic. He is a typical little boy and loves anything with an engine. His passion however, is trains. We have enough Brio train track to circle the world several times over! He is very talkative with his main topic of conversation being Thomas the Tank Engine.

Joe is very sociable and has a large group of friends. Joe can be quite bossy and fiercely independent but also very generous and thoughtful. Joe has a magical ability to treat his big sister with care and compassion while at the same time treating her absolutely no different to how he did when she was well, a rare gift.

There is a 25% chance that a child born to parents who are both carriers of the faulty gene will be affected. So in July 2014 Joe was tested for MLD………….we were once again left devastated by the news he had also inherited the condition.

Disease progression in Connie was swift and the Doctors told us there was little they could do. As Joe was pre-symptomatic he was offered pioneering treatment in Italy as part of a clinical trial. Our family spent four months in Italy were Joe underwent a bone marrow transplant which involved chemotherapy and six weeks of isolation in a foreign hospital over Christmas and into the new year.

During his isolation Joe said over and over there were three things he missed, Costa (our cat), his friends and most of all his big sister.

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