Meet Ipex Syndrome Survivor – Toby Ellis

April 12, 2014 | 0

Toby Ellis is a child who had an extremely rare condition, which affects only a handful of children in the world. He suffered from a genetic condition known as Ipex Syndrome. Toby had spent a better part of his young life hospitalized. The body of Toby was unable to produce white blood cells, which his body required in order to turn off the immune system after it had fought an infection.

What this means is that when the immune system was triggered to fight an infection, instead of shutting off after that work, it continued to attack his body. Without treatment it was anticipated that Toby would not live to see his first birthday. He was taken to specialist unit under care of Professor Andrew Cant, at Newcastle General Hospital.

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Toby Ellis Ipex Syndrome

Professor Cant is one of the leading experts in dealing with Ipex Syndrome. Cant recalled that by the time Toby was taken to the hospital, he had already been hospitalized for long, and was in bad condition. Cant did not think that the baby would have lasted for more weeks if he had not been brought to Newcastle General Hospital.

In order to keep Toby safe from infections, the specialist doctor and professor kept him in a bubble. Toby was kept in a state where air around him would be constantly filtered. Even Lisa, Toby’s mother could not be allowed to approach him without going through a strict scrub up procedure. The procedure would help keep the baby alive.

The mother would not kiss or cuddle her baby in fear that she could pass deadly infections to him. Apparently, Lisa was training to be a nurse when she became expectant. However, Lisa separated with her partner immediately Toby was born. Lisa recalls that Toby looked perfectly when he was born though he was five weeks before the delivery time, meaning he was born prematurely.

However, he did not need any special care. The only hope that could help Toby was having a bone marrow transfusion, as Professor Cant explained. Cant said that they knew without such a transplant, it would be hopeless for the survival of Toby. This was very devastating for Lisa. Cant explained that there had been no much understanding about this condition and in terms of treatment, only about five or six had been done in form of transplants but they were performed elsewhere.

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Cant even added that among the transplants, they had not gone well. However, the big challenge was finding a bone marrow that could fit Toby considering he was the only child. A search was placed for a donor to help donate a bone marrow that could save Toby. After an extensive worldwide search for a donor to give a bone marrow that would match that of Toby, it was found somewhere in Australia.

During the search which lasted for about two weeks, Toby was on drugs that helped stop the immune system from attacking the body. Luckily, the bone marrow that was found matched perfectly in a scale of twelve to twelve. The Ipex Syndrome is a condition associated with genetics and it is passed down on the female line. At this time Toby was waiting for a donor to give out a bone barrow, Lisa’s sister Catherine was pregnant and there was speculations that there would be a risk of her baby having the same condition.

Toby Ellis Ipex Syndrome picture

Before the transplant could be done, Toby had to be destroyed of his bone marrow. Therefore, we went through chemotherapy sessions twice a day. He was given high toxic drugs which would leave him without an immune system. This meant that he did not have a defense against infection. He was now more vulnerable to infection.

A Newcastle General Hospital scientist flew to Australia to pick the bone barrow that had been found. That bone marrow consisted of stem cells, which are said to have the potential to introduce a new immune system to the body of Toby having destroyed the old one. When the transfusion was done, Lisa would wait for about four weeks to know if it was successful.

It was such an emotional time for Lisa. Toby had the transplant and six days after, he developed problems with breathing. In a nebulizer to aid Toby breath, doctors became worried that this could be an early sign of rejection of the transplanted bone marrow. Toby’s blood continued to be analyzed everyday hoping that the body would produce the first white blood cell needed to control the new immune system.

Three weeks after the surgical transplant, Lisa received an urgent message that she needed to call the hospital. Happily, it was good news and doctors said that the transplant was working for Toby. Now, 3 months following the transplant, Toby was able to go home, while Lisa’s sister Catherine, her baby boy Henry was cleared of the condition Ipex Syndrome.

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