The story of Jordan
On the 27th of March 2018 our beautiful son freddie was diagnosed with a rare genetic degenerative disorder called niemann pick disease type A. Effecting only 1 in every 250,000, This disease causes harmful amounts of lipids to build up and store in basically all major organs. There is no cure and treatments were not an option for us at anytime due to the progression of Freddie’s illness.
On this day we were told we would not see Freddie live until school age, little did we know that on the 23rd of November that year we would say our final goodbye before our baby sadly passed away due to increased respiratory complications due to this disease.
Although Freddie’s journey from diagnosis to him passing was short, we as a family faced A lot of complications due to lack of understanding from health professionals because most of them had never heard or supported anyone with this condition it is that rare and unheard of. With only one metabolic specialist based in Scotland, Freddie taught and educated us all every single day. Although I cannot thank every single nurse, doctor, community nurse, consultant enough for Freddie’s care, awareness needs to be spread in order to care for patients and family’s also in our situations.
Freddie coped with everything thrown at him with the biggest smile on his face always! he never lost his beautiful spark and to honour our angel, awareness needs to be spread.