In 1 very stressful year, Rio has almost died twice, he’s had 2 major surgeries, spent 45 nights in 4 different hospitals. Hes been under general anaesthetic 3 times, He’s been resuscitated once, He’s had his bowel perforate & his windpipe crushed. He’s had bronchiolitus 3 times, bronchitis once & gastroenteritis once. He’s had 5 ambulance rides & so many hospital visits, we once had 6 appointments in 1 week and saw 3 hospitals in 1 day! He has been fed by a tube for 8 months, hes had 6 cannulas, 2 pic lines, about 30 Xrays, 1 Videofloroscopy, 2 microlaryngoscopy & broncoscopy’s, 2 nasoendoscopys, 1 CT scan, 3 echo’s, 1 sleep study, 4 ECGs, 10 vaccinations & more blood tests that I can count. All of that with 1 congenital heart anomaly & the addition of 1 very important extra chromosome, 21. He got through it all because he is a warRIOr, we got through it all because we had ALOT of help. 8 fantastic Charities have supported us in more ways that we could explain. We have been given somewhere to stay, close to the hospital, when Rio has been in intensive care or in high dependency. We’ve used sensory toys, books, even lifesaving equipment, all provided for by charity donations. We’ve had counselling, family days out, access to huge amount of knowledge & endless hours of advice. So to mark These 365 days, we want to give back, so that these 8 charities can continue to help our family & 1000’s of families just like us.
Any funds raised will be divided between,
Cots for Tots
The Grand Appeal
Great Ormond Street Hospital
The Sick Children’s Trust
Ups & Downs Southwest
Wouldn’t change a Thing
Time is Precious
The Carers Centre
Follow Rio’s Journey on Instagram @downwithrio
For more information, read the long story.......
The Long Story When Rio was born we had no idea he had any health issues, within 24 he was rushed away to Bristol Children’s Hospital to have emergency surgery, as his bowel had perforated. We almost lost him.
As we said our goodbyes we were told that he had Down syndrome. We were in shock.
After Surgery, he spent 3 weeks in the Neonatal Intensive Care Unit. Luckily we were given a place to stay at the Cots for Tots house, so we could be close to him. As Bristol is a specialist hospital, the charity looks after babies from all over the South West & Wales, as far as Cornwall. All those parents whose babies are intensive care are homed by this fantastic charity, right across the road!
Once we were home we began adjusting to life as a family of four, trying to deal with what had happened and what we were about to face, a life with a child with a disability.
5 weeks later, Rio stopped breathing, he was resuscitated & we spent another, very stressful, 2 weeks in Baths Royal United’s Childrens Unit.
When we were finally sent home Rio was being fed by a naso gastric tube, we had to learn quickly to adapt.
Over the next few months we were in and out of hospitals, for appointments & tests, seeing specialists, having treatments & procedures. During this time we used numerous facilities, toys and sensory equiptment all donated by local charity “Time is Precious”.
Eventually Bristol Children’s hospital found that Rios windpipe was being severely compressed by vessels from the heart. He had 2mm to breathe through.
Last week, Rio had Cardiac Surgery at Great Ormond Street, who were just incredible! They removed the main vessels from the heart and fixed them away from Rios windpipe. The surgery was a success, however it could take years for his windpipe to return to normal as it was so severely crushed. Whilst at GOSH, We were given somewhere to stay by “The Sick Childrens Trust” so we didnt have the additional stress of hotels & travelling in london.
Throughout it all, we have been supported by Ups & Downs, a local Down Syndrome Charity, who have put on parties, where we could meet other families, they have sat with us and completed endless paperwork & been there when we have needed advice. We have also been given hope by the charity “Wouldnt Change a Thing” who have included Rio in their 2019 calander & have helped to changed our perception of Down Syndrome.
We appreciate your support in helping us, help others by supporting these wonderful charities.