Latchford baby Theo Greenall is doing really well

Theo Greenall, who turned one in November last year, was diagnosed with SMA type 1 – a rare genetic condition affecting 1 in 10,000 babies.

It came after he didn’t respond to reflex tests following a routine check-up at Warrington hospital and at four weeks old, Theo was taken to Alder Hey Hospital.

For parents Natalie and Sean Greenall – who moved to Latchford in 2018 after getting married – after Theo received Zolgensma treatment in November, there is no better sight than seeing their child flourishing in his environment.

Natalie, from Dallam, said: “He’s now doing really well. Because he had been poorly they were conscious he might react differently to the drug so they put protocols in place and he has been brilliant.

“They are all surprised. He is moving more and he has responded really well to it and he is doing amazing.

“The doctors don’t promise anything because the drug is new and the only benefit they can say for sure is that he won’t have to have a spinal injection that he was having before.

“To us, is it hopeful and we are seeing him progress.

“There are still limitations like assisted walking. We are really hopeful just to see him take steps, whether it’s assisted or not, we don’t mind.

“From there being not much hope to being offered one treatment and now being offered this million pound treatment, it’s special.”

However, it has never been straightforward for the family.

Sean and Natalie Greenall pictured with son Theo

Originally when Theo was found to be eligible for the drug, he was in the intensive care unit (ICU) at Alder Hey and intubated on a ventilator so he could not have the treatment.

Natalie – a former pupil at Dallam Primary School and

William Beamont Community High School – added:

“They gave us hope and said we will see how he is when he recovers as one of the criteria is that you have to be off a ventilator for so many hours and respiratory wise, he went a bit downhill.

“It’s been a battle and quite an emotional journey.

“He got intubated in July in ICU, he was only there for four days and in the high-dependency unit he then recovered and weaned off his ventilation.

“Theo received the drug early in November as she had shown he was stable enough over time.”

The news was met with mixed emotions.

“That day it was the happiest news ever but also, he was in ICU fighting for his life,” said Natalie.

“When you hear the words ‘he is not out of the woods yet’, it was the happiest news ever but faced with a very difficult situation with him still on a ventilator, and me and my husband didn’t know how to react.

“We wanted to celebrate but we are in ICU and our son is poorly.”

Theo's parents are hopeful that he can one day take assisted steps

But now things are looking up for Theo and his family, Natalie can’t thank the NHS enough for what they have done for her baby boy.

She continued: “We couldn’t do this without the NHS. Theo would have palliative care, not be thriving and we wouldn’t know how long his life would be without the NHS. We are hopeful there has been no regression in his condition with progression.

“There is a lot of negativity about the NHS as with anything, there will be the bad stories but I always say no family ‘no matter what you think about the NHS with the waiting times for doctors, just remember Theo has a drug’, people have benefited from it and for us as a family, there is no chance that people can have negative views of the NHS.”

Natalie has set up a Just Giving page with the hope that people donate to help Theo get a specialised bath, as he is limited a shower on the NHS.

“People can fundraise if they want to. He has got his gene therapy but now we need to try and enable him to move more, have a bath and support him with day-to-day basic care.”

Donations can be made at https://www.justgiving.com/crowdfunding/theosjourneysmatype1?utm_term=mX5BWjNJr