June 18, 2024

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Blackpool parents of baby boy with a rare syndrome looking to give back and raise funds for ‘amazing’ charity

Baby Teddy was born with a rare syndrome and a fundraiser has been set up for the charity which has helped him and his parents
Baby Teddy was born with a rare syndrome and a fundraiser has been set up for the charity which has helped him and his parents

Carl Wood, 32, and Amber Nuttall, 26, from Bispham are looking to give back to the Ronald McDonald House which has enabled them to stay with their nine-week-old son Teddy in Manchester.

At 12 weeks pregnant, the couple’s baby had increased fluid on the back of his neck and they were referred to Saint Mary’s Hospital in Manchester. They later discovered he had clubfeet and micrognathia, a condition in which a child has a very small lower jaw.

Delivery driver Carl said: “The team at St Mary’s decided he had a genetic condition and weren’t sure what the outcome would be. As the pregnancy progressed we also found out his hands were turned in and he stopped moving.

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Teddy was born on the November 23 at St Mary’s Hospital in Manchester

“At this point we were told there is a high chance he would not survive and the team before surgery were prepped to deliver a baby that would not live.”

Teddy was born on the November 23 at St Mary’s Hospital in Manchester by a planned c-section however when he was arrived, he wasn’t breathing for himself.

Carl said: “He had a small chin which was set back and it proved extremely difficult for doctors to get a breathing tube into him, so Teddy was rushed to surgery for an emergency Tracheostomy.

“It was four hours before we managed to see Teddy. It was a scary time not knowing if he had managed to pull through everything that he had gone through.

Ronald McDonald House Manchester

“We have been updated from the doctors now and we have been informed that Teddy has a rare condition called Moebius syndrome. This gives Teddy facial paralyses meaning he is unable to cry, smile, grown or anything that you and me take for granted. This is heart breaking that we will never see our beautiful baby boy smile.”

Carl explained how the current situation is that Teddy is unable to move his face and his jaw is locked closed so is he is being fed through an NG tube that goes into his stomach.

He added: “We are awaiting another operation for him to have a tube fitted that will go through his abdoman and straight into his stomach rather than through his nose.

“He is more severely affected than other children with this syndrome as he is still unable to breath for himself and is on a ventilator which is breathing for him.

The pair are supporting Ronald McDonald House Charities for their fundraiser

“He is such a fighter though and everyday he is showing everyone that he will never give up.

“It could still be another 12 months before Teddy is able to come home but he is constantly making steps towards it. With us being from Blackpool it scared us that he will be in there for a year and we hated the idea of not being near him.”

When Amber was discharged from hospital, the couple were ‘petrified’ that they wouldn’t be able to be near Teddy, however the Ronald McDonald House in Manchester came to their rescue.

Carl said: “The hospital had sent a referral form to them and when I went over to speak to them to see if they had received a referral and how long it takes, they were amazingly kind and mentioned that our stay had just been approved and that we could move straight in.

Amber and Carl with Marcy, CJ, Tyler and Rocco

“This has given us the freedom to be able to be at Teddy’s bedside all day every day since he was born.

With lockdown I don’t feel Ronald McDonald House have been able to raise as much money as they normally would so I thought I would try and help a little. With us knowing we have a very long stay ahead of us, we wanted to do something on Teddy’s behalf to raise money for this amazing charity.”

The couple have set up a GoFundMe page for people to donate money towards Ronald McDonald House and Carl said he is planning different ways to raise as much cash as possible.

He said: “ I have also decided to make the donating fun for everyone. The best way I feel this could be is to have a raffle.

“I have contacted multiple businesses across Blackpool who have come to my aid in donating raffle prizes

These are things such as a seven hour tattoo sitting, a aqua thermal experience at Ribby Hall, shopping vouchers, a photo shoot and manyMore.

Parents Carl Wood and Amber Nuttall have started a fundraiser

“In total we have in excess of 50 prizes and companies are still wanting to donate.

“The idea of the raffle is that anyone that donates through Teddys GoFundMe page will automatically be entered into the prize draw to win one of these amazing prizes.”

Amber was studying counselling prior to her pregnancy and has had to put her education plans on hold due to Teddy’s situation.

Carl said it has also been extremely hard on his other children, Tyler, nine, Rocco, seven, Marcy, and CJ, four, who have not been able to meet their younger brother and until the pandemic is over are unlikely to meet him.

The details of Teddy’s journey and the fundraiser can be found on ‘The Story Of Teddy’ Facebook page and this is also where Carl will be posting details and the results of the raffle that will take place on the Saturday, February 13.

As well as raising money, Carl also wants to promote the profile of Ronald McDonald House and raise awareness of Teddy’s condition.

He said: “For us to be able to hopefully be able to raise as much money for an amazing cause, I am wanting to raise awareness for Mobius syndrome and I am wanting as many people to be in for a chance in winning these amazing prizes.”

Carl and Amber have set a fundraising target of £5,000 on the Go Fund Me page and have already raised more than £1,600 since it was launched on January 17.

Carl added: “To raise that amount already is fantastic. It’s all for an amazing cause and we have no idea what we would’ve done if it wasnt for this amazing charity.”

How to explain Moebius syndrome?

Moebius syndrome is an extremely rare neurological disorder which is present at birth. The exact incidence is unknown.

It is characterised by weakening or paralysis of the muscles in the face which control expression and lateral eye movements.

People born with Moebius syndrome are unable to smile or frown, blink their eyes, or suck, although sometimes only one side is affected.

Predominantly the sixth and seventh cranial nerves are involved but other nerves may also be affected.

There is currently no test for Moebius syndrome and diagnosis is based on assessment of the physical symptoms and taking into account the medical history of the individual.

Further examinations such as CAT scan or MRI of the brain and brainstem may be carried out in order to confirm the diagnosis.

The first indication that an infant has Moebius syndrome may be a mask-like expression when crying.

Unfortunately there is no cure for Moebius syndrome but some of the symptoms can be treated.

For further details about the syndrome, visit Facial Palsy UKWhat is Ronald McDonald House?

Ronald McDonald House Charities UK provides free ‘home away from home’ accommodation to families while their child is in hospital.

The charity was founded in the USA in 1974 and the UK network was set up in 1989. It has been the McDonald’s Corporation charity of choice since it was founded and it takes its name from the fast food retailer cartoon clown character.

There are 11 of the houses across the UK and each of them serves an NHS hospital.

Ronald McDonald House Manchester, based at Hathersage Road, provides free accommodation to families with children receiving treatment in the Royal Manchester Children’s Hospital and St Mary’s Neonatal Unit, which are located next to the house.

A spokesman for the charity said: “RMHC are passionate about the support we give to the 6,000 families helped each year.

“Since 1989, we have supported over 50,000 families from all walks of life, both across the UK and some corners of the globe.

“For those families, staying close to their child in hospital receiving care is the number one priority.

“As an independent charity, we rely on the support and generosity of our volunteers, fundraisers and donors to keep 6,000 families close to their sick children in hospital each year.”

Visit RMHC for more information about the charity.