At 5 weeks old our little superstar Otis was diagnosed with a rare, life threatening liver disease called Biliary Atresia. Otis had major surgery two days after diagnosis in the hopes this surgery wouldl improve his liver functionality. Unfortunately we found out a few months after surgery that it was not a success and Otis will now require a liver transplant for which he is on the waiting list and we are continuing on the long journey ahead for him.
Otis has not been phased by what he has been through and is a super happy, cheery little warrior. This has been a rollercoaster of emotions for us all and given the rarity of the condition (1 in around 15,000 - 20,000 babies are affected by this condition) we wanted to know everything we could about the diagnosis to help our little man. This is where Children’s Liver Disease Foundation (CLDF) came in, ensuring we had been provided with all information from the specialist liver unit at Leeds hospital and that we had all the relevant support we needed.
CLDF have been invaluable and so helpful. They will also be a key support for not only myself and Jon as parents but also for Otis as he grows as this is a condition he will have for life.
We are continuing to fundraise for such a great cause that help and support families, children and young people with liver disease and to raise awareness of such rare conditions. So far our fundraising from ourselves and family and friends has included a number of events and there are upcoming events;
- walking Snowdon (Otis came along for the adventure) May 2018
- a garden party July 2018
- the three peaks challenge July 2018
- charity music gig in Manchester August 2018
- Salford 10k September 2018
- Wigan 10k September 2018
- charity rugby match between Greater Manchester Fire & Rescue Service and North West Ambulance Service October 2018
Any donation towards our continued fundraising would be greatly welcomed 💙💛
Thanks for taking the time to visit my JustGiving page and to read about why we are raising money for the CLDF charity.
Danielle & Jonathan xx
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