Teddy was born healthy and well, although he suffered with what we thought was terrible reflux.
When he was a year old I noticed he wasn’t breathing correctly, our local hospital couldn’t work out what was wrong and he was referred to a specialist team in London. After many tests a CT scan revealed that he had a very rare form of children’s interstitial lung disease called Neuroendocrine Hyperplasia of Infancy, its called NEHI for short.
NEHI was first classified in 2005, there is no known cause or cure, although evidence suggests there is a genetic link, they are still searching for a gene abnormality. Treatment is supportive with the use of medicines and oxygen, he is expected to improve with age, but because the disease is so new, we don’t know how it will affect him as an adult. The disease itself causes inflammation and air trapping in his lungs, which means his breathing is laboured and his oxygen levels are low.
At the same time he was also diagnosed with swallowing difficulties, because his lungs are so fragile he is unable to drink normally and his fluids need to be thickened.
So far we can see that everything we are doing is working. He has an amazing team of doctors and healthcare professionals working constantly to make sure he remains well. He’s a smart, energetic and cheeky 4 year old, he’s mad about bugs and doesn’t let anything stand in his way, he’s the youngest of 4 and certainly keeps us all on our toes.
Initially, we were just relieved to have got a diagnosis as it took quite a few months. Some of the tests were quite gruelling and hard for us to watch as parents, we had a lot of appointments and hospital stays to get through but once we knew what we were dealing with, we could do what we needed to do. It’s not been easy but we tried to carry on as normal and not let it stop us, now things are much more stable and it’s just a way of life, he’s doing amazingly well.
As his school start was looming, we didn’t know how it would work, because we carry his oxygen round for him all the time. The school hadn’t dealt with this before either so it’s taken a lot of hard work to make sure everything was ready, that’s where the team at Cerebra stepped in and have played a huge part in that.
I was looking for a way for Teddy to independently carry his oxygen around, even the smallest cylinders are too heavy. I came across the Oxy-gem trolleys they had made for other children and asked where we could buy one. They came back to me so quickly and offered to make him his own one, which was specific to his needs. The wonderful David and Gerallt from the innovation team made him a fantastic trolley so he can push his oxygen safely around on his own, it will make such a difference to him especially at school. They also offered to adapt a bike for him to carry his oxygen so he really won’t miss out on anything. We cannot thank them enough for what they have done.
Check out Teddy with his Oxy-gem: