Willis’ fight against Crohn’s
Donation protected
My 5 year old son was diagnosed with Crohn’s Disease in 2015 when he was just 2 years old. This condition is extremely rare in very young children and involves numerous hospital appointments in Sheffield and London. He also has numerous hospital stays in Sheffield as he has continued to be ill for the duration of his diagnosis. The medication he takes is not keeping it under control and his body has now become steroid dependent. We are hoping to try some new medication but as yet it is not licesened in children. His medication also suppresses the immune system meaning that he is unable to fight illnesses and some common childhood ones are extremely dangerous if he catches them.
Our doctors here and in London regularly tell us that our son is a ‘unique and complex’ case and that a permanent colostomy bag may be his only option, even though he would still need the biological medications to fight the disease in other areas of his digestive system.
The condition involves my son needing the toilet urgently and frequently and for long periods of time. He also passes large amounts of blood and mucus due to the amount of inflammation in his digestive system. This in itself is extremely stressful and distressing for my son to manage, but there is also the pain, chronic fatigue, loss of appetite and weight loss to manage. He misses quite a lot of school due to being in hospital or attending appointments.
As he eats very little and looses weight he is fed overnight. He had a nasal feeding tube for 4 months but more recently had a operation to provide him with a PEG feed meaning he is now fed through a tube directly to his stomach.
He is an absolute superstar at managing his condition and takes it all his stride. He has more strength, courage and resilience than anyone else I know. We have to regularly see a psychologist due to anxiety around food and also around him not seeing himself as ’normal’ and asking lots of questions about why he is different to his friends and peers.
We are planning on doing a number of different fundraising events such as different runs, races, triathlons, etc to name a few, to help raise funds for CICRA, treatments, willis’ well-being and to raise awareness about this horrendous disease.
If you feel you could help support us with this please donate or collect sponsorship for any events you are involved in to help us achieve our target.
Our doctors here and in London regularly tell us that our son is a ‘unique and complex’ case and that a permanent colostomy bag may be his only option, even though he would still need the biological medications to fight the disease in other areas of his digestive system.
The condition involves my son needing the toilet urgently and frequently and for long periods of time. He also passes large amounts of blood and mucus due to the amount of inflammation in his digestive system. This in itself is extremely stressful and distressing for my son to manage, but there is also the pain, chronic fatigue, loss of appetite and weight loss to manage. He misses quite a lot of school due to being in hospital or attending appointments.
As he eats very little and looses weight he is fed overnight. He had a nasal feeding tube for 4 months but more recently had a operation to provide him with a PEG feed meaning he is now fed through a tube directly to his stomach.
He is an absolute superstar at managing his condition and takes it all his stride. He has more strength, courage and resilience than anyone else I know. We have to regularly see a psychologist due to anxiety around food and also around him not seeing himself as ’normal’ and asking lots of questions about why he is different to his friends and peers.
We are planning on doing a number of different fundraising events such as different runs, races, triathlons, etc to name a few, to help raise funds for CICRA, treatments, willis’ well-being and to raise awareness about this horrendous disease.
If you feel you could help support us with this please donate or collect sponsorship for any events you are involved in to help us achieve our target.
Organizer
Emma Gosling
Organizer