The family of a little girl with a severe muscular disorder are pleading with Fine City folk to help give her the best life possible.
Grace Howes was diagnosed with spinal muscular atrophy type one when she was just nine months old and her family were told to "go and make memories" because she wouldn't live past the age of two.
The condition is a severe form of muscle weakness evident at birth or within the first few months of life which can affect a child's body control, weak cry or cough and difficulty with swallowing and feeding.
However after battling through the last four years Grace's family have recently moved to a bungalow in Thorpe St Andrew and are hoping to do everything they can to make her life more comfortable.
Luke Howes and his wife, Rebecca, live with their two daughters Grace and her two-year-old sister Annie.
Mr Howes, 34, said: "We feel very strongly on giving Grace the best life we possibly can.
"We were devastated when Grace was diagnosed but she's battled ever since, having lumbar punctures every three to four months until December 2021.
"Grace loves to be the typical four-year-old but there is a lot of things she can't do that others can.
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"Unfortunately Grace can't walk but she can sit and has a stander which she uses each day for an hour to be able to weight bear, which is good for her bone density.
"She also has a power chair which she loves and it gives her great independence."
Grace received Zolgensma, the most expensive drug available on the NHS at £1.8m a dose, when she was three years old which her family believe has helped her get to where she is now.
Unfortunately she is still required to wear a spinal brace every day, special straps for her feet to keep them in line and is on a ventilator at night which gives her the well-needed rest from working so hard every day just to breathe.
One way the family wants to help their daughter with the constant battle of keeping her in the best shape possible is with a hydrotherapy pool.
Mr Howes added: "It gives her freedom to move around and has improved her leg strength.
"We're now starting our home renovations to make it more accessible for Grace to live the freedom she so deserves.
"We also need to get her a new car seat and buggy which are coming in at around £7,000 without everything else she needs.
"Hydro pools start at around £20,000 and so far we have around £5,000 raised from previous events and donations.
"It's not as easy as taking her to a normal pool because it's very risky for her to be taken in and out of different temperatures due to her weak respiratory system.
"If she were to catch a cold it could be life-threatening and she'd normally end up in hospital for a minimum of two or three weeks."
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In order to raise money for the pool Mr Howes is taking part in the Ride London-Essex 100 event on May 28, a 100-mile ride, with his friends Josh Lincoln and Jonathan Moffat.
They have set a target of £25,000 to give Grace a better quality of life, with £1,600 raised so far on their page at GoFundMe.com.
Mr Howes said: "I don't expect people to just give us money, but we're putting ourselves financially to the max and to have any money would be amazing for Grace.
"This new home is her safety net and it would so beneficial to have things like a hydrotherapy pool on our doorstep for her."
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