Mum of Washington girl diagnosed with Poland Syndrome raises hundreds for charity as she looks to raise awareness

Poland Syndrome is a condition which affects around 2,000 people in the UK in which an individual has a missing or underdeveloped pectoral muscle in their chest.

It’s often not picked up until children enter puberty, particularly in girls who will not develop one of their breasts. Other symptoms of the condition include a smaller hand with shortened fingers, fused finger bones, absent nipple, and in some cases small or underdeveloped kidneys.

Michelle, 38, first noticed an issue with daughter Everleigh’s chest when she was around 18 months old.

She said: “It was while I was bathing Everleigh that I noticed her nipple looked flat compared to the other side. When she put her arm back you could also notice where the chest seemed to sit back under her armpit.

"We thought it would just develop, but at the age of three I took her to my GP. I was referred to a pediatrician at Chester-le-Street who diagnosed Poland Syndrome.”

The syndrome has a sliding scale of severity and Everleigh is currently enjoying a fulfilling and active childhood and loves to take part in gymnastics.

She’s also had her kidneys checked and they are “functioning fine”.

However Michelle added: “Fortunately it is only the chest muscle issue which she seems to have but the doctors have said we will have to fully assess Everleigh’s situation when puberty kicks in and we see how her right side develops compared to her left.”

Due to the rarity of the condition – which afflicts between one in 30,000 and one in 100,000 births – there is little support provided by the NHS and following Everleigh’s diagnosis Michelle and husband Allan, 44, felt “isolated and didn’t know where to turn to for help”.

The family have found the support they need after being put in touch with the Poland Syndrome Support and Network which provides support meetings and connections for families living with the condition. The charity also conducts research into the condition and is funding a clinic in Birmingham – the only one of its kind in the country to provide dedicated support and treatments for the syndrome.

With Sunday April 30 representing Poland Syndrome Awareness Day, Michelle and the staff at Buttons Nursery in Washington last week held a raffle to raise £550 for the charity.

Michelle said: “I wrote to the parents to make them aware of the condition and my own situation. They were fantastic in buying tickets and one parent even donated a week in her caravan a Haggerston Castle which we raffled as first prize.

"Another parent runs Diddi Dance and they donated a children’s birthday party while staff at the nursery worked to create lovely gift hampers. It’s a fantastic cause as the charity provides that support network to talk to people in the same situation and where we can ask questions about what to expect as Everleigh, who is now four, gets older.”

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The national charity was founded by Sam Fillingham, 42, after her own son George, now 14, was diagnosed with the condition.

She said: “The clinic is really important in putting people in touch with specialist doctors who deal with the condition, something which is not really available on the NHS. The condition can cause problems with mobility and leave people having to live with pain as the body tries to compensate.

"It can also cause mental health problems as girls and boys try to deal with body dysmorphia and look to cover-up where their body may not have developed. Women can look to get treatments such as implants or fat transfers but it is very difficult to get these on the NHS.

"Michelle's efforts to raise this money will make a huge difference to our community and help to fund network events as well as improved treatments and diagnosis.”

As well as raising money, Michelle’s key aim is to raise awareness of the condition and staff at the nursery wore red and green – the charity’s colours – on the day of the raffle.

She said: “If things don’t look quite symmetrical or right on your child then get them checked out by your GP, but keep pushing for a diagnosis.”

More information about the condition and the symptoms to look out for can be found on the Poland Syndrome Support and Network website where you can also donate to the charity’s cause.