Charity started after baby's mitochondrial death

A support foundation has been set up by a family in Cornwall whose son died within a month of being diagnosed with a rare mitochondrial disease.

Noah Jordan, who was nine months old, died in March from Alpers-Huttenlocher Syndrome, which attacks the liver and brain and has no available treatments or cure.

His parents said they hoped the Noah Jordan Foundation would raise £100,000 in its first year to pay for medical research, raise awareness and support other families and young people.

Noah's father Ben Jordan said: "He was so brave in the face of unsurmountable adversity. He laughed and chuckled and smiled every day until the day before he died."

Mitochondrial diseases see mitochondria in a person's cells not producing enough energy to power the cells, the NHS says.

Noah's family first sought medical help on 18 February when his mother Natasha noticed some yellowing in his eyes and, after calling 111, took Noah to an urgent treatment centre in St Austell.

He was immediately sent to the Royal Cornwall Hospital in Truro, where medical staff suspected acute liver failure and that he was critically ill. ​​

He was then moved to Birmingham Children's Hospital, which was the nearest paediatric specialist centre for liver failure.

Ben Jordan said: "More than a week later, Noah was still deteriorating rapidly and they still didn't know what was causing it.

"He was reliant on a central line into a large vein in his neck to provide medication, and an NG tube into his nose to provide fluids.

"It wasn't until he started having uncontrollable seizures, developed hypoglycaemia and had to be admitted to the paediatric intensive care unit, that mitochondrial disease was mentioned.​"

On 1 March, consultants told Noah's parents that he was going to die and there was nothing they could do.

"This led us to having to make the incredibly heart-breaking choice to move Noah's care to palliative," said Mr Jordan.

"This disease is particularly prevalent in infants and children, and incredibly progressive, and we were told it was likely that Noah would not have long.​"

For the following nine days, Noah stayed at the Alexander Devine Children's Hospice in Berkshire with his family.

"The kind and compassionate staff not only made sure Noah was as comfortable as possible at all times, but provided our family with the opportunity with the limited time we had left with him to make memories," said Mr Jordan.

"[We were] spending time with him in the swimming pool, in music therapy and other activities with family and close friends.

​"Noah died peacefully in our arms on 19 March."

Ben Jordan said seeing the deterioration of Noah would haunt him forever and there were "things I can't unsee".

He said: "He was so brave despite that physical and mental deterioration, and that is why we really want to try and make a difference."

The foundation's logo is based on the shape of mitochondria mixed with a dinosaur outline, with the slogan: "The extinction of mito one stomp at a time."

Ben Jordan said: "Freddie is the inspiration of it.

"Being three-and-a-half, he loves dinosaurs and he often wears a T-shirt with a dinosaur on it."

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