Edwinstowe toddlers prepare for major transplant operations

Jessica and Mark Hallam with children Ruby and Jack at their Edwinstowe home.
Jessica and Mark Hallam with children Ruby and Jack at their Edwinstowe home.

A SIMPLE ear infection on his first birthday led to the diagnosis of a life-threatening genetic disorder in two year-old Jack Hallam and his little sister Ruby.

The Edwinstowe siblings have a rare inherited disorder called SCID (Severe Combined Immunodeficiency) which affects their ability to fight infections.

Now the two toddlers are preparing for life-saving bone marrow transplants after suitable donors were found on the international register.

“Jack had an ear infection, which cleared up with anti-biotics but was soon followed with a cough and cold that led to a chest infection,” explained mum, Jessica Hallam.

“He lost his appetite and weight and just wasn’t himself, so after going back and forth to the doctors he was referred to Kings Mill for tests.

“Jack was then passed to Liz McDermott at the Queen’s Medical Centre where SCID was diagnosed.”

The first case of SCID was reported in 1950. Before the advent of modern medicine and treatment, most affected babies died within their first year as it generally occurs from three to six months old.

It wasn’t until Jack was two, which is unusual, that he was finally diagnosed in November last year.

“Doctors said he was lucky to be alive. Had we known, we would have done more to protect him,” added Jessica.

It was after blood tests were carried out on nine month-old Ruby, to check if she could be Jack’s donor, that it was discovered she also had the condition.

Common complaints like coughs and colds may last longer and be more severe, and childhood infections like thrush and chicken pox can prove deadly for sufferers.

“It has changed the way we live our lives as a family and placed restrictions on us all as we have to avoid, as best we can, the possibility of picking up bugs and infections,” Jessica said.

“We have to keep visitors to a minimum. Jack and Ruby can’t play with other children either so we no longer go to playgroups and parks for fear of catching even a cold.”

As well as living a very isolated life, time is taken up with numerous hospital trips for tests, treatment and preparation for Jack’s forthcoming bone marrow transplant.

Jessica, who has learned how to administer a weekly immunity-boosting injection to each of her children in an attempt to cut down on stressful hospital visits, added: “We have just returned from another trip to London’s Great Ormond Street Hospital to prepare Jack for his transplant operation, which is due to take place later this month.”

Luckily, donors have already been found for both Jack and Ruby in Poland and Germany. But before the transplants can take place, the children will have to endure seven days of chemotherapy to clear out the old immune system.

“Jack is an amazing little boy,” added Jessica. “He has been through a lot and more is yet to come. But he is very resilient and extremely brave.”

The family are currently staying at Jessica’s mum’s house on Mansfield Road whilst builders are working on their home on First Avenue.

“The support and help we have received from our families has been amazing. I don’t know what we would have done without them.”

Following the transplant, Jack will be kept in isolation at the hospital to prevent infection for eight weeks, the first four of which not even Jack’s dad Mark or Ruby can be with him.

The family will have to endure the process all over again when Ruby has her transplant six months after Jack. And both children will have to take medication for the rest of their lives.

Jessica and Mark have enormous gratitude for the international donors whose bone marrow will be used to save their children’s lives and hope by telling their story, other people may come forward to help others.

The Anthony Nolan Trust is the UK’s most successful bone marrow register. Visit Anthony Nolan or phone 020 7284 1234 and ask for donor recruitment.