WHEN Jax Ali was born with one of the world’s rarest health conditions, it was feared he would not live beyond his second birthday. At three weeks he was diagnosed with deadly Ipex syndrome, which causes the body’s immune system to attack its own organs. It affects just one in 1.6million people worldwide. Parents Jenni, […]
WHEN Jax Ali was born with one of the world’s rarest health conditions, it was feared he would not live beyond his second birthday.
At three weeks he was diagnosed with deadly Ipex syndrome, which causes the body’s immune system to attack its own organs.
It affects just one in 1.6million people worldwide. Parents Jenni, 39, and Siadina, 33, were told a bone marrow transplant was the only cure.
And thanks to an anonymous donor, Jax, who turns one this month, had the life-saving surgery in March. He is now back home with his family, including siblings Jaya, five, and Jasmine, three, in Salford, Gtr Manchester.
Jenni, an assistant head teacher, says: “I can’t describe how it feels to have my family all back together.
“When Jax was diagnosed we were faced with every parent’s worst nightmare. Now, we can start thinking about the future.”
Jax was born by C-section last October, weighing 7lb 7oz.
Jenni says: “This was going to be our final baby and we couldn’t wait for him to arrive. Jaya and Jasmine were both so excited.
“But at three weeks old, he woke in the night for a feed and wouldn’t settle. His breathing was fast and his tongue was poking out, like he was very thirsty.
“My instincts told me something was wrong, so I rang 999. When they took Jax’s bloods at the hospital I knew it was serious.
All I could do was watch and beg the doctors to make him better
Jenni Ali
“Suddenly, we were surrounded by doctors. His sugar levels were off the scale so they started giving him bags of fluids and insulin.
“All I could do was watch and beg the doctors to make him better.”
Jax was transferred to the high-dependency unit at Manchester Children’s Hospital and diagnosed with neo-natal diabetes.
Jenni says: “It took two days to get his blood sugars under control. Although I tried to be strong, I cried every night.”
Three weeks later, and with the diabetes finally in hand, Jax was deemed well enough to go home.
But Jenni says she and Siadina, a barman, became more like their son’s carers than his parents.
She says: “I had to check his sugar levels every three hours by taking blood from his heels, so his tiny feet became sore and bruised.”
And two weeks before Christmas, the family were given the devastating news that Jax had Ipex syndrome, a condition caused by a faulty gene mutation.
A thank you to Jax’s donor will never be enough
Jenni Ali
Jenni says: “The consultant had tears in his eyes as he explained what his diagnosis meant.
“When he explained it was unlikely Jax would survive beyond his second birthday without a transplant, I couldn’t take it all in. All I could think about was finding a donor.”
Three weeks later, the family received the news that a bone marrow donor had been found.
Jenni says: “It was such a relief, but we didn’t dare get our hopes up in case something went wrong. All we knew was that the donor was a 26-year-old woman from the Netherlands.”
Jax’s transplant in March was a success but he had to spend a month in isolation to prevent infection.
“For the first few weeks only a handful of people were allowed in the same room,” Jenni says.
“As he began to improve, we were allowed home for the odd night. When they said we could take him home permanently, I cried with relief because we were finally a family again.”
Jenni says Jax is now loving being home with his siblings and is trying to take his first steps.
She adds: “Jax has changed so much. He’s a happy, smiley little boy despite everything he’s been through.
“A thank you to Jax’s donor will never be enough.
“Not only has she given Jax a new life, she has given my family a future.”
