Firstly thank you for being on this journey with us... it’s a rollercoaster!!
So... why are we here? Patrick is a happy 4yearold boy who already in his short life has been through soo much.
Born at 35weeks with a condition called GASTROSCHISIS. This is a condition where the bowels and sometimes other organs are on the outside of the abdomen....
Unfortunately Patrick’s bowels we’re so matted that once they were placed back inside him they a few weeks later were removed, leaving him short bowel.
We’ve lost count how many times Patrick has been to theatre, stomas, caecostomys, broviac lines, bowel perforations- he’s truly been through it all.
Due to Patricks extreme short bowel, his own remaining bowel (9cms) is unable to absorb any nutrients so he is artificially fed via a broviac line which goes directly into his heart.
This itself causes massive risks to Patrick due to infection etc. He is currently getting over a full line infection, line removal due to sepsis.
The TPN feed that keeps him alive is also his down fall. TPN long term can cause damage to the liver and already Patrick have serve fibrosis.
The decision was made to place Patrick on the donor registry for a Bowel transplant in 2018 and in December he received his first gift of life.
Unfortunately again this didn’t go well and Patrick went in to severe rejection within 9 days. This just never recovered and more and more complications came. His team of consultants and surgeons had to agree to remove his gift when it finally overtook his little body and he developed PTLD - Post-transplant lymphoproliferative disorder a type of cancer to lymph nodes.
This for Patrick have him - upon removal- another lease of life! More determination to survive.
Right now, Patrick needs to be relisted only this time he needs a liver and bowel- possibly his stomach too. So daunting when he’s only just getting over what’s he’s just been through.
Before Patrick can be placed on the register, he needs a preventative treatment called CYTOTOXIC T-CELL THERAPY.
This is not available on the NHS and he has been turned down for independent funding via nhs England panel.
We have now been given the go ahead to raise these funds ourselves which could run into £20,000 +
This will pay for 4 rounds of the therapy including courier charges, administering the medication and the outpatient appointments. This treatment would be given in Birmingham which is 100 miles from our home so extra costs could arise should he need to be admitted, as this treatment will not be funded at all through the NHS.
The therapy will help Patrick massively reduce the complications what nearly cost him his life on his first transplant and has seen positive results in others.
Any further information on Patrick’s journey from pregnancy to now is available on his Facebook page - Gastroschisis warrior - Patrick
We thank you for taking the time to read our journey and we ask even if you can’t help us, please share Patrick’s fight. A share could raise a £.