Couple says overwhelming support helped them at toughest time

Ed and Robyn Reynolds with their daughter Tilly and dog Isimbard
Photo: Alan Walters EMN-160322-100848001

Ed and Robyn Reynolds with their daughter Tilly and dog Isimbard Photo: Alan Walters EMN-160322-100848001

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On July 4, 2014, Robyn and Ed Reynolds were overjoyed to welcome their first child - a bouncing baby boy Noah.

But just five months later their lives were turned upside down when they were told that Noah had a chronic illness and was unlikely to make it to his second birthday.

But the support that surrounded Robyn and Ed saw them through the most difficult time of their lives.

Recalling the time, Robyn, 36, said: “He was the most amazing little boy and for the first five months we just didn’t know anything was wrong at all.”

Noah had slightly delayed motor skills so as a precaution he was taken for tests but a paeditrician at Leicester Royal Infirmary told the couple straight away that Noah was suffering with a serious neuro muscular condition.

The family spent their first Christmas together worrying while they waited for the outcome of tests and just a few days later, they were given the devastating news that Noah had Type One Spinal Muscular Atrophy (SMA).

SMA is caused by a genetic disorder and affects the motor neurons in the spinal cord, preventing messages travelling from the brain and resulting in progressively weaker muscles.

“We had a very difficult Christmas knowing something was hugely wrong,” said Robyn. Getting the diagnosis was horrific. You never understand what it feels like to have your blood run cold until you hear that your child is going to die.”

Shortly after the diagnosis, Noah completely lost the use of his legs but the family’s focus quickly turned to making Noah’s time, however short, as happy as possible.

Over the course of the next few months, the family enjoyed trips to the seaside, the zoo where Noah met lemurs, and many walks in woodland near their home in Oakham so Noah could enjoy the sensory aspects. They were also welcomed at Rainbow’s Children’s Hospice in Loughborough, where Noah used the hydrotherapy pool.

One of the fondest memories the family has is of his first birthday when Ed says their home was transformed into a “jungle of balloons” - one of Noah’s favourite things as he was able to grab them and enjoy the bright colours.

The family’s dog Isambard was Noah’s best friend and he spent many happy hours laughing as the dog’s wet nose touched him, or listenting contently to the sound of cat Tiger’s purr. His favourite cartoon character was Spongebob SquarePants and he loved watching baby TV.

In June 2015, Noah lost the ability to swallow and was fitted with a feeding tube but life carried on as normally as it could.

“We tried to make sure that every day was his best day and that every day was filled with love and happiness. He never suffered,” said Robyn, who didn’t return to work when her maternity leave ended so she could care for her son. “In many ways for us, it was both the best and worst year. We have so many happy memories.”

At the time, Ed, 39, who works as a sales manager at Navitron in Oakham, was standing in the parliamentary elections as the Liberal Democrat candidate. But his focus was, of course, his son and he missed some debates as a result, although he says the party and his fellow candidates could not have been more understanding.

In the final few weeks of his life, Noah deteriorated further and he became paralysed. He died at home on October 10, 2015, with his parents by his side.

Noah is remembered by his parents as a calm and happy boy, despite what he faced in his short life.

“He was such a funny little boy and so expressive,” Robyn recalls. “There’s never a minute goes by that I don’t think of Noah.”

His funeral was held at Hambleton Church where the couple married and where he was christened.

Five weeks after Noah’s death, the couple welcomed his little sister Matilda, affectionately nicknamed Tilly.

“When Tilly was born, it was such an odd mixture of feelings - that complete jubilation of a new baby while feeling like our world was ending after losing Noah,” Ed said.

Robyn added: “With Tilly now she’s so different so we realise there were signs with Noah. With every day that passes she’s getting more and more like him and she’ll definitely know all about her big brother. She’s really kept us all going. I don’t know what we would have done without her.”

SMA is caused by a genetic disorder and one in 40 people carry the missing gene. There is a one in four chance of a baby being born with SMA if both parents carry the missing gene as in Robyn and Ed’s case but thankfully Tilly is healthy.

It is only now, five months on from Noah’s death, that they have felt able to share their story in order to not only make more people aware of SMA, but also to make people aware of the support that’s available.

Diana’s Children’s Nurses, based in Thurmaston, provided invaluable support not only to Noah but to Robyn and Ed. Two of the nurses were there when Noah passed away.

“They really did become part of the family and Noah absolutely loved them,” Robyn said.

The couple also received invaluable support from GPs at Oakham Medical Practice and say they have “nothing but praise” for the amazing NHS team that surrounded them, offering support at such a desperate time.

They also were offered support by Rainbow’s Children’s Hospice.

The charity Ally Cadence Trust (Act for SMA) also offered support, offering sensory toys and a special travel system meaning Noah could lie down in the car making it easier for him to breathe.

Since Noah’s death, the couple together with their family and friends have raised more than £15,000 for Act for SMA including with a cricket match hosted by Oakham Cricket Club last summer.

Ed and his friends will be taking part in Tough Mudder at Belvoir Castle in aid of Act and in the future the family hope to fundraise for the Diana nurses as Noah’s legacy. The nurses are partially funded by the NHS but would be able to help even more families if they had more funding available.

To find out more about Act for SMA visit http://www.actsma.co.uk or to sponsor Ed visit https://www.justgiving.com/Noah-Reynolds