Help Riley Beat Hirshprungs Disease Campaign
Hello, my name is Amy, and I am Riley's mom. Riley is 10 months old and we live in Port Elizabeth, South Africa. This campaign is to raise funds for our family to pay for Riley's medical expenses.Our beautiful boy, Riley, was born with Hirschprung's disease. This is a congenital birth defect where the nerves in the rectum and colon are missing, and it means that he could not poop. After a lengthy hospital admission, Riley had his first surgery at 6 weeks old. During this operation they removed the diseased part of his colon (he had 20cm of functioning colon) and created a colostomy. Riley then spent the next 6 months with a stoma bag.
When he was 7.5 months old he had his reversal and pull-through surgery. There were lots of complications which lead to a 3 weeks ICU stay with two more theatre procedures until he was well enough to come home.
After being discharged, however, Riley struggled for 7 weeks with chronic diarrhoea, having absolutely no bowel control. This had a massive impact on his quality of life. Our medical team was unable to help us any further in PE and told us to just wait for it to get better.
But we could not carry on watching our little boy in so much agony and doing so unwell, so we sought out specialist help in JHB. After a drastic turn of events, we got on the next flight and were admitted to hospital for Riley's 3rd surgery.
The plan was to investigate what was causing the issues, see if there was something wrong with his colon because it was not absorbing fluids, and then create an Ileostomy to provide relief from the constant diarrhoea. Nothing prepared us for what we were told after his surgery.
When the surgeons came out they told us that Riley has NO colon. The 20cm of healthy colon could not be found in his abdomen, and his Ileum had been connected to his anus. After investigation it was discovered that Riley's colon had been 'accidentally' removed during his previous surgery. This was a massive shock to us.
We are now in JHB, with our 10 month old in hospital, and we don't know what the journey ahead looks like. We are drowning in medical debt from all the hospital admissions, surgeries and medical costs that we've accumulated along the way.
Riley now has an Ileostomy which will require more stoma bags, care, and follow-up visits to his new medical team in JHB. My husband, Gray has done everything humanly possibly to provide for us, but I have not been able to return to work so we are just barely holding it together. To date we have sold countless belongings and made massive life changes to pay for our son's medical needs. We have sacrificed so much for him and will continue to do so until he is well.
We are asking for your help so that we can continue paying off all the shortfalls we keep facing with our medical aid. Up until now we've had to take out personal loans and credit to cover the extra medical costs, and it is no longer sustainable.
When we finally make it home, we have to continue to works with a team of specialists (dieticians, feeding therapists, OT's, surgeons) while Riley has an Ileostomy.
We thought Riley's struggles were over when he had his pull-through surgery. We could never have imagined ending up here and finding out that we had to take a step backwards and go back to a stoma bag.
The impact of raising these funds will be monumental. We have been drowning for a very long time and the financial pressure on top of everything else that is happening is extremely crippling. Funds raised will be used to pay off previous debt accumulated to cover medical shortfalls, upcoming medical bills from his latest surgery, and to pay the future fees of his specialist care once we are back in Port Elizabeth.
Please help us so we can ensure Riley receives the very best care and treatment possible.
Connected Campaigns
Statistics
Fundraising target
R 200 000.00Donations to date
R 111 302.88Donor Messages
Anonymous
God is good
Anonymous
Our thoughts and prayers are with you all.
Simon and Michelle
Wishing all the best for Riley. Stay strong!
Anonymous
Anonymous
Thoughts and prayers are with you all. Love Emil and Julie-Anne
Friends of the Twiggs
Anonymous
Anonymous
Anonymous
Activity feed
Anonymous donated US $ 50 via Help Riley Beat Hirschprungs Disease
05 Mar 2024
US $ 50
Anonymous donated R 3 000 via Help Riley Beat Hirschprungs Disease
05 Mar 2024
R 3 000
Simon and Michelle donated R 5 000 via Help Riley Beat Hirschprungs Disease
03 Mar 2024
R 5 000
Anonymous donated R 500 via Help Riley Beat Hirschprungs Disease
03 Mar 2024
R 500
Anonymous donated R 1 000 via Help Riley Beat Hirschprungs Disease
03 Mar 2024
R 1 000