How a devoted couple never ran out of hope for their sick child
A Co Down man whose son needed a bone marrow transplant when he was three, tells Una Brankin how running helps the family repay those who saved their little boy's life.
Geoffrey (39) and Leah Calvert (34), from Kilkeel, run to raise funds for charities and their son Robin (8), who has chronic granulomatous disorder. Geoffrey, who works in accident repair, and Leah, a cook, also have a daughter, Lucy (5). Geoffrey says:
Robin was a healthy baby but when he was 18 months, he started having problems with constipation. Before he turned three, he was getting very poorly and losing weight, so Leah's parents suggested getting further medical opinions. We sought out private healthcare at the Ulster Independent Clinic in Belfast, from where he was referred Royal Victoria Hospital for an endoscopy and colonoscopy.
Dr Szabo, there, worked tirelessly to find out what was wrong with Robin. He tested him for everything that he could think of, as he had also developed colitis and was very thin. Finally, in 2010, the doctor diagnosed Robin with Chronic Granulomatous Disorder, which means he has nothing to kill bacteria in his body. It is an inherited disease of the immune system which leads to severe infections.
The only cure is a bone marrow transplant. We had to travel to Newcastle-upon-Tyne for the surgery in 2010. The first time in the operating theatre, he had fungal pneumonia, so they worked hard to get him well enough for the transplant, but every time we were getting somewhere, he became unwell again.
We got home on Christmas Eve in 2010 for a couple of days but spent most of the time in the Royal Belfast Hospital For Sick Children. We spent seven hours there on Christmas Day. Lucy was only six weeks old when her brother was diagnosed, so the first year of her life was spent between the Royal in Belfast and hospital in the north-east of England.
When we went back to Newcastle, Robin still had lots of intravenous (IV) drips and medicines. He was tube fed, as he couldn't keep any food down and needed to get his weight up to give him a better chance of getting through the transplant. It was a hard battle but in March, he was moved into the bubble-unit, where he would spend the next five weeks. That's a special room that is clinically clean, with sterile air being pumped in.
There was a blue line on the floor in the room that he wasn't allowed to cross and when we went in, we had to scrub up and wear an apron and a surgical hat. Lucy wasn't allowed in; there were three allocated carers so it was myself, Leah and my mum.
Leah's mum and dad got over as often as they could, as well as some friends and family. We couldn't hug or kiss Robin and had to keep contact to a minimum. It was hard but we are both Christians and our faith helped us through. Plus, we had a lot of support from our church and the local community. There was a coffee morning held in my mum's church and they raised a lot of money for us, as we had a mortgage and myself and Leah weren't able to work.
If it weren't for everyone being so generous, we would have had to sell our house.
Robin had his bone marrow transplant in April 2011, followed by high-strength chemotherapy. It was hard seeing him go through the treatment but we knew it was the only way to get him better. We met lots of really lovely people; we have made some friends for life.
Robin was in the hospital until June. Leah stayed in his room until he went to the bubble-unit, and myself and Lucy stayed in a place called Crawford House, a home from home run by a charity called The Sick Children's Trust. It's in the grounds of the hospital and was a five minute walk from my room to Robin's.
It was lovely staying there and it was free of charge, which was one less thing that we had to worry about. We took part in the Great North Run in 2014 to raise money for The Sick Children's Trust and Make A Wish, as they granted Robin a trip to EuroDisney which we all loved. It's a great memory that we have together, that we couldn't have afforded.
Robin got out of hospital on June 6, 2011, and we went to stay in a halfway house supplied by the Bubble Foundation. It runs the bubble-unit, supplying it with equipment toys and lots of other stuff. This year we would love to run again to raise funds for the Bubble Foundation.
All we know about Robin's bone marrow donor is that he is from Italy. We would love to meet him because his donation saved Robin's life.
We stayed in the halfway house until we got to go home on July 17, 2011. Robin was still on lots of medication but at least we got home. He has had lots of hospital appointments and has had a cyst removed from his nose earlier this year. He also has a complex misalignment in both his legs and might need surgery in the future to try to fix it, but we aren't thinking too much about that. We are praying that he won't need it.
He has physio regularly to help keep his limbs free but he is very heavy on his feet and would fall over quite a lot. But he loves playing football and riding his bike - he is really good on his bike.
As a family, we are stronger than ever. We had to deal with a lot together - it was hard but we coped. Running is a great way to relieve stress, plus it's a common interest. Even through Leah is a faster runner than me, we can run the same race and we can talk about it after.
In the past, Leah would have always walked for exercise but I hadn't done anything for years. I used to mountain bike but had got lazy.
In 2013, we watched the Great North run on TV and said we would love to do it the following year, so we started to train. Leah started with a friend, running from one street light then walking to the next, and kept doing that; then trying to go further and further.
She did a couple of 10ks and then we got friendly with Collette, another runner from Kilkeel and a member of Murlough Athletic Club. We both joined and ran with the three-mile group and I was surprised to make it without walking too much.
The club is a great support and always great craic - if it wasn't for Murlough, I probably would have given up. It really motivates you to keep running.
I had taken a break from running for a lot of weeks but I'm starting back at it and would like to get to one of the last forest runs, maybe Mount Stewart or Castlewellan, as they're close to home.
Running in the winter is fine, as you soon warm up when you get going. It's a nice feeling when you cross the line and see the kids cheering for you - it gives you a buzz even though you're totally wrecked.
This year we are going to try and save up enough to go to the Great North Run again, as Newcastle has a soft spot in our hearts. I've also started cycling and would like to do a cycling challenge this year, too. Maybe the Coast to Coast race in May? It's always a great atmosphere at the runs, as you meet all sorts of people and make friends from all over. We really do enjoy it.
- The next Belfast Telegraph Run Forest Run event is this Saturday, January 2, at Kilbroney Forest Park, Rostrevor, Co Down, starting at 11am
On your marks, get set ...
MOUNT STEWART 10K
January 16, 11am
Newtownards, Co Down
Antrim Castle Gardens 10k
February 6, 11am
Antrim Castle Gardens,
Antrim, Co. Antrim
February 27, 11am
Castlewellan Forest Park,
Castlewellan, Co Down
Coping with a complex disease
- Chronic Granulomatous Disease is an inherited disorder in which certain immune system cells do not function properly. This leads to ongoing and severe infection
- Risk factors include a family history of recurrent or chronic infections
- CGD can cause many types of skin infections that are hard to treat, including blisters or sores on the face (impetigo), eczema, abscesses and boils.
- It can also cause persistent diarrhoea and swollen lymph nodes in the neck
- Antibiotics are used to treat the disease and may also be used to prevent infections. A medicine called interferon-gamma may also help reduce the number of severe infections. Surgery may be needed to treat some abscesses
- The only cure for CGD is a bone marrow or stem cell transplant
- For further information visit ghr.nlm.nih.gov/condition/chronic-granulomatous-disease