Specialised surgery for our superhero Campaign
Everyone who knows Riley Marot, knows him as a feisty, energetic little boy that is full of spirit and bravery. On the outside, he looks like any other happy little boy, but on the inside his body is constantly fighting for air.
Riley was born with severe tracheobronchomalacia, a congenital condition that negatively impacts his airway and makes it difficult for him to breathe. Over the past five years, Riley has spent more than his fair share of time in hospital, has often needed to be on oxygen, and has not been able to attend school for risk of infection.
Two years ago, Riley was put onto nocturnal CPAP to keep his airways open at night. Last year, he also started with Polygam infusions (9-hour drips to strengthen his immune system) after his airway collapsed, and he started choking.
We have been blessed to have found amazing doctors and are incredibly grateful to our Lord who has held and protected Riley until now, and healed him in many other ways, but we also know that it is now time to find a medical solution for our boy.
Unfortunately, there is no surgery that exists in South Africa for tracheobronchomalacia, and anything similar has had a very low success rate. In exploring international pediatric hospitals, we were referred to the Great Ormond Street Hospital (GOSH) in London. GOSH has a specialised unit specifically for airway complications in children and has the only surgeon that performs specialised tracheal surgery in the region. GOSH has a team of doctors that can offer our boy a chance at normal airway function, and a happier life.
We have been in conversations with specialists at GOSH since December last year and are hoping to get across to the UK in November.
The cost of this surgery is in the region of R3.5 million. It is a complicated procedure that involves a team of doctors and may require three phases. We will only know the full extent of the procedure once Riley has had the diagnostic tests (the day before surgery), and will only know the final cost after he has had the operation.
Discovery Medical Scheme has agreed to fund 50% of the final cost of the surgery, which we are very grateful for. However, there is still a shortfall of about R1.75 million for the surgery, not to mention other expenses such as consultations, flights and accommodation in the UK.
When talking to friends and family about Riley’s surgery, many have asked if we would be setting up a BackaBuddy page to help generate funds. This has been something that we have grappled with, as we live a blessed and privileged life in South Africa.
Unfortunately, the reality is that the costs of this surgery are severe, and we are likely to be at a shortfall even after we have done all that we can to try and fund the surgery ourselves.
We are committed to taking out loans to enable us to pay off the costs of the surgery but have also been encouraged by friends and family who have offered to help. Should anyone like to assist us in covering the upfront costs or pay off the expenses of the surgery, we would humbly accept this with huge appreciation.
There are many aspects to this journey that we have walked with our Riley-Roo, some of which have been incredibly hard and painful, but some of which have been beautiful and full of joy. Seeing the way that people have sought to pray for, bring meals, and contribute financially to Riley’s healthcare and looking after our family is something that we will be forever grateful for.
We don’t take any of it for granted and thank everyone from the bottom of our hearts for the support, love and care that we have received over the years.
If you would like to help Riley-Roo ahead of his surgery, you can do this in two ways:
- Please pray for us as a family, for Riley’s protection and long-term health
- If you feel led, you can financially contribute via the BackaBuddy link
Thank you,
Xav and Tash
