Alyssa was born with a genetic condition called Noonan Syndrome which can affect the whole body including the heart. Alyssa spend the 1st few months of her life in and out of hospital because of feeding issues. At around 8 months old Alyssa has her 1st of many operations, she had pulmonary valve stenosis and needed it correcting. Alyssa struggled to reach her milestones, she couldn't roll over or sit up like many children her age. This was due to low muscle tone, she had and still does have daily physiotherapy. Alyssa uses leg gaitors to help stretch her tight hamstrings and heel cups to keep her feet straight.
When Alyssa was 5 she still wasn't potty trained, ate very small portions, was extremely tired all the time and passed blood when she passed a stool. The Drs rushed her into hospital and ulcerative colitis was diagnosed. Alyssa started medication straight away, over 4 years she has had countless stays in hospital for iv drips with nasty side effects to the meds.
In October last year the decision was made for Alyssa's colon to be removed and an ileostomy bag was going to fitted. We thought that she was going to have a healthy life and a new beginning Unfortunately the bags have become a problem, she has sensitive skin so the bags don't stick very well leaving her skin sore and burnt from the faeces leaking.
In March this year things have taken a turn for the worse. Alyssa was not feeling well so after a visit to the hospital and blood tests the Dr has requested yet another camera to check for Crohn's Disease as Alyssa is in pain when eating. Whilst in hospital she will have an ng tube fitted to help with the extra calories and hopefully put on weight.
Alyssa also went for a routine heart scan and despite the pulmonary valve looking good her aortic valve is beginning to narrow so it's something that needs monitoring and will need operating on in the future.