Donate for Ethan
Our son Ethan was born September 2013 and everything seemed fine. As time went by and he was getting older we realised that he wasn’t thriving like a baby his age should be. We took him to 3 different pediatricians, had blood and urine tests and was admitted into hospital twice for being dehydrated though we were told that each child develops at their own pace.
Ethan was not crawling, talking, or even sitting without support by the age of 11 months so we knew something wasn’t right. After pleading with the pediatrician to find out what was wrong we were admitted to hospital again and Ethan went through 3 days of being on a drip, having 7 blood tests, 4 urine tests, 2 stool tests and a number of different doctors coming to see him. We were eventually referred to the Renal Clinic at Westmead Childrens hospital because they informed us that his kidneys were leaking all the essentials we need.
On the 19th September 2014 (2 weeks before Ethan turned 1) I was told that he had Cystinosis. I had no idea what this was and had never heard of it before, so I sat at the hospital and looked it up on the internet. That is when it felt like my heart had been ripped out and my world had fallen apart. It was one of the hardest days for me and I held Ethan so tight telling him we will get through it together.
After 2 blood tests twice a week for the first few weeks and a lot of tests and different appointments we now have an understanding of what Cystinosis is. Ethan is now on 8 different medications every 6 hours for the rest of his life. It was so exhausting travelling back and forth from the hospital a few times a week and then for the doctor to say, “Ethan will need the gastrostomy tube surgically inserted into his little belly and will need to be fed via this of a night time” The words seemed to have escaped her mouth so slowly as I digested what I was being told. In a way I felt like I had been knocked down as I had been doing all I can to help Ethan put on weight but obviously was not doing enough.
After 16 ½ months Ethan finally took his first 4 steps and it just happened to be witnessed by both myself and Chris. This really touched our hearts as Chris is normally at work and doesn’t get the witness big milestones like this. There were tears of joy and Ethan’s siblings were cheering him on. We have all been waiting for this day to come when our little man has enough muscle tone in his legs to carry his body without assistance. So so happy.
Since having the gastrostomy tube put in Ethan has thrived and we weigh in every single night as he loves to see every 100 grams he puts on and can’t wait to tell the family so we can all do a celebration happy dance. In saying this there are also times when the scales tell a different story and his weight has decreased dramatically and therefore Ethan gets really upset.
Ethan has recently turned 3 years old and has just started doing Karate with his three older siblings. This was one emotional day as he received his Karate Gi and looked like a little ninja. Cystinosis won’t keep him down.
Amanda and Chris Fenn