THE parents of a young boy diagnosed with an ultra-rare condition during the early weeks of the pandemic have shared their heartbreaking story.
William Howard was an energetic five-year-old when mum and dad Mihaela and Simon had their world changed forever in May last year.
Their son suddenly developed twitching in his right leg and lost the ability to walk, before being rushed to Great Western Hospital with suspected spinal damage and then referred to John Radcliffe Hospital for more tests.
His condition worsened as he fell into a constant state of seizures and was placed into a medically-induced coma that lasted two weeks.
While in the coma, a DNA test discovered William had a very rare form of Mitochondrial disease called DNM1L.
Only 10 people in the world are known to have the same condition and consequently doctors gave William a 20 per cent chance of survival.
Mum Mihaela, a 41-year-old nurse, said: “It was unbelievable what was happening to my son who had been so happy and healthy.
“When he was in the coma I lived on a single chair by his bedside – I didn’t want to leave him and Covid meant that my husband couldn’t visit.
“As a mum you don’t care what happens to you, you do everything you can for your child.
“During his coma William had constant seizures and had a temperature of 40C.
“Covid restrictions meant that the hospital couldn’t use fans, so I placed wet towels on him constantly to keep him cool.”
The Stratton couple have a younger daughter, Sofia, and dad Simon had to continue working as a chef manager throughout the family’s nightmare.
The 43-year-old said: “It was incredibly hard to not be able to be there, but I couldn’t go and we we still needed to make money.”
Mihaela and Simon were told that if William’s seizures could not be stopped that the best thing would be to turn off the machine keeping him alive.
Mihaela said: “At that point my husband was allowed into ICU as we didn’t know what would happen.
“We couldn’t accept that he would die. We prayed and prayed and slowly we saw his temperature come down.
“On June 5, William opened his eyes – only for a short time but it was a sign that he was gradually getting better.”
William was able to return to his home in September 2020.
Mihaela quit her job because William requires full-time care at home but the family now receives additional support from children’s charity Rainbow Trust.
“Our Rainbow Trust family support worker, Ellen, started supporting us in December and she is amazing,” said Mihaela, who was reluctant to accept help from the charity to begin with.
“Aside from William’s medical team, Ellen is the only support we have and the only person we let into the house to give me a break from looking after William and Sofia.
“When William was rushed to hospital recently, Ellen looked after Sofia all day so that I could be with him.
“The children love her, they count down the hours when she is coming. It is lovely for Sofia to have some fun and attention from Ellen too as it is so hard for her. She said to me one day: ‘Mummy, when will we be a normal family again?’.
Simon added: “It’s been very hard for both of us.”
“But as a parent you you need to fight.
“You can’t let yourself down because then you let them down.”
Doctors have been unable to say what William’s life expectancy is but he is now back at school as the family adjust to their ‘new normal’.
“We try to make every day special now because we don’t know what is ahead.” Mihaela said.
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