Message of thanks for Maisy’s sensory toys

Kimberley Hearn of Seabank Road, Fleetwood, and her daughter Maisy, who suffers a rare condition.
Kimberley Hearn of Seabank Road, Fleetwood, and her daughter Maisy, who suffers a rare condition.
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The Gazette’s Swallowdale Trust Appeal is our £10,000 helping hand for worthy groups or individuals under the age of 25 in Blackpool, Fylde and Wyre.

On Thursday more than 30 donations were made to a range of recipients – all as deserving as one another.

Kimberley Hearn of Seabank Road, Fleetwood, and her daughter Maisy, who suffers a rare condition.

Kimberley Hearn of Seabank Road, Fleetwood, and her daughter Maisy, who suffers a rare condition.

And among those to receive special help from the trust was 15-month-old Maisy Hughes.

At two days old, Maisy was rushed to Blackpool Victoria Hospital where she had a scan which showed a large cyst.

She was transferred to Royal Manchester Children’s Hospital for treatment.

Following this she was transferred to Derian House Children’s Hospice for end of life care as it was believed she would not live beyond a few hours.

But she survived – and this week the 15-month-old was given a £200 donation by the trust to buy specialist sensory equipment and toys to improve her quality of life.

Mum Kimberley said the donation was a fantastic gesture and told how the cash would help.

She added: “I would like to thank everyone at The Gazette and Swallowdale for the money.

“It will make a big difference as the sensory toys we want for Maisy are so expensive. The toys are brilliant for her. We still don’t know how much she can see and Maisy loves the noises.

“We are currently in the process of making a new bedroom for her to stay in which is homely and makes her feel comfortable.”

The mum-of-two is expecting her third child in October and says she takes her daughter’s health day-by-day.

Kimberley added: “She’s just come out of Blackpool Victoria but she’s doing great.

“I just take every day as it comes and try not to think too far into the future.”

The 25-year-old said Maisy needs constant care and earlier this year told The Gazette why Maisy needed help from Swallowdale Trust. She added: “Every Friday Maisy gets day care at Brian House Children’s Hospital in Bispham.

“Because she is blind she likes the noises. We do not know how much she can see. She likes to touch things. She really likes the sensory room there. We just want her to be happy and comfortable at home too.

“It would make a big difference. I can’t believe how expensive things are for a disabled child. Our car seat cost £630. We could only afford it through family donations and hope the Trust will help.”

Maisy’s condition affects one in 10,000 newborns.

Septo-optic dysplasia is a disorder of early brain development.

Although its signs and symptoms vary, this condition includes underdevelopment of the optic nerve and abnormal formation of structures along the brain.

Schizencephaly is an extremely rare developmental birth defect characterised by abnormal slits in the brain.

Miss Hearn said the first few days of Maisy’s life in March last year were very traumatic – with doctors admitting she might not have survived.

She added: “I got discharged from Blackpool Victoria Hospital on the Friday when I had her.

“But by Sunday morning she was blue. She had not been feeding great and she was very cold, with her breathing deteriorating.

“We went back to hospital and after a scan found she had a large cyst. She was given a high dose of morphine, where she went into a coma. They told me she might not wake up.

“The doctors did a scan and found one part of her brain had not developed.

“They took her off the morphine, hoping she would wake up. We were transferred to Royal Manchester Children’s Hospital, where they said she had days to live.”

The 25-year-old, who lives with partner John Hughes, 28, added: “I was hysterical when I saw her on that Sunday morning. My eight-year-old daughter Keira went through it all too. She was so worried. I did not know how to explain it to her.

“I don’t know how I kept strong. It affected everyone. My world was turned upside down.

“Maisy does not sleep for long. It tends to be two hours tops. She went to Derian House Hospice and she did really well.

“They spoke to me saying she was doing really well and tried to get her home. We went to Blackpool Victoria Hospital for a week where she was fitted with an NG tube. It is a feeding tube. She was not taking her bottle and they did not know if she would eat.

“We were away from home for four weeks.”

Kimberley added looking after Maisy can be exhausting, but she “finds a way.”

“I have to give her medication morning, dinner and night. After five weeks we had the NG tube out, but then had to put it back in. She needs a lot of medication and needs to take growth hormone. She has her bad days – over Christmas she screamed non-stop. She got diagnosed with cerebral irritation by doctors in Liverpool a few months ago. It explains her screaming.

“It is very hard and exhausting. My family say ‘I do not know how you do it’.

“I just say ‘I have to do it.’

“At times I say I can’t do it for the rest of my life – she is really hard work. But I find a way.”

Katrina Milburn, a paediatric nurse at Blackpool Victoria Hospital, nominated Maisy for The Gazette’s Swallowdale Trust appeal.

She said: “Maisy needs 24 hour care which is all provided by her parents.

“She can be very unsettled and cry inconsolably for hours at a time. Maisy also has no sleeping pattern and can be awake overnight for days in a row.

“Maisy has extra medical needs, including administering medicines, specialist feeding, weekly bloods and regular hospital appointments.

“Maisy has needed specialist chairs and car seats to aid her comfort, these have all been provided by parents due to her age.

“I believe these parents would benefit from a grant to help pay for Maisy’s specialist equipment and sensory toys to help settle Maisy and keep her happy and comfortable.”

For a full list of winners and more pictures from the Swallowdale awards, see MOnday’s Blackpool Gazette