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“I thought my daughter was just clumsy, but the devastating diagnosis changed our lives”

Nicola Morris, from Moorside, Oldham, first noticed her little girl Imogen was unsteady on her feet when she was just two – but now she sees her “deteriorating every day”.

Imogen has a life-limiting condition
Imogen has a life-limiting condition, but her mother initially thought she was just being clumsy

A mother who first thought her baby was clumsy now finds her daughter “getting worse every day.”

Nicola Morris of Moorside, Oldham, first noticed that her little girl, Imogen, was unsteady on her feet and stumbling around when she was two years old.

After years of desperately searching for answers and multiple visits to the doctor, she finally received word that Imogen, now 15, has an extremely rare genetic disorder that affects the nervous system.

Imogen has a life-limiting condition, meaning her mother has to support her with walking, eating, and bathing, causing her movement and abilities to deteriorate over time.

She might even lose her eyesight The Manchester Evening News reports.







Imogen’s mother has to help her walk, eat and bathe
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As Nicola struggles to mother three children and tries to support her daughter’s needs, she hopes to travel to the Netherlands to see specialists looking at possible treatments for children with the disorder.

It is a painful experience when Nicola sees her own daughter lose her independence day by day.

Speaking of MEN Her single mother Nicola said: “I always noticed that things were different with Imogen, even when she was two or three years old. Her balance was poor, she was clumsy on her feet and fell over all the time.

“At first we just thought she was young and she was my first child so I couldn’t compare it to anything but I noticed she was getting worse and worse.

“She was referred for physical and occupational therapy, but then by sophomore year she couldn’t walk without holding on to things, couldn’t go through doors and became less sure of her feet. I pushed for someone to see her and she was diagnosed with dyspraxia and autism.

“I saw that she was regressing more, she was starting to get tremors and convulsions, so I pushed for another referral to a neurologist. She was referred for an MRI scan and it came back as having white matter in her brain. Genetic testing confirmed to us in 2015 that she had leukodystrophy.”

Imogen’s rare form of the disease, 4H leukodystrophy, is incurable. She has the POLR3B mutation.

4H leukodystrophy is inherited and only occurs when both parents carry the genetic mutation but generally have no symptoms themselves.

Affected people often have motor problems, such as B. Stiffness of muscles and joints or with balance and coordination.







Nicola documents Imogen’s journey on a Facebook page
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As a teenager, Imogen is unable to even walk down the street to meet up with friends or eat regular foods that have not been tenderized. Everyday tasks such as showering and climbing stairs are becoming increasingly unbearable for her.

Defiant mother Nicola raises money to help Dr. N. Wolf in the Netherlands who works in the Department of Pediatric Neurology at the Center for Childhood White Matter Disorders at VU University Medical Center in Amsterdam.

“We all carry faulty genes and it turns out that me and Imogen’s father both carried them and passed them on to her. We were practically genetically incompatible,” explained Nicola.

“We were told there was no cure and that she could potentially lose her vision, speech and mobility. All of the nerves that send signals to her brain for movement and the muscles in her body don’t go through.

“Now she struggles with her food and needs soft food because she is easily choked and I’ve seen that get a lot worse. She also struggles with speaking, almost like her tongue is too big for her mouth.

“It’s frustrating because we can’t be given any answers and I know there’s nothing I can do. There are mornings when she can’t even walk or get around. It is so stressful and heartbreaking to watch your child deteriorate before your eyes every day.

“She is a young girl who has no independence. She can’t go for a walk or do normal things like bathe herself, her life just becomes so restricted. She’ll be 16 soon and she’s going to prom and she just does it. “I don’t do things that any other teenager could do.”

Nicola’s friend has Fundraising efforts started to see family visit Netherlands to see specialist for more clarity – at a cost of over £300 per appointment. She also raises money for house developments to make Imogen’s life easier, including a wet room to wash in, a wheelchair and stair lift, and a service dog.

Nicola, who documents Imogen’s journey on a Facebook page says Oldham Council Occupational Therapy has carried out an inspection in the past but that her daughter does not meet the requirements for a wheelchair. She wants to be able to go out as a family with her other two children, Gracie, six, and Erin, eight.

A joint spokesman for Oldham Council and Oldham Care Organization said: “The health and well-being of our residents is vital to us and we will do everything we can to support those who need our help. We conduct thorough assessments to determine each individual’s needs and make recommendations for equipment and adjustments in accordance with relevant policies and laws.

“Our community occupational therapy team and our pediatric physical therapy team are in close contact with the family and will continue to work with them to ensure they receive the support they both need and deserve.”

Nicola added: “We need a chair so we can go out together more easily as a family. A wet room so she can bathe on her own as she wishes so badly to be able to do things herself.

“It’s so hard being a single mom with no support. She can’t go out and do anything because she’s just too vulnerable, but there’s only so much I can give her. As I hunt for help, her life is getting worse.”

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https://www.mirror.co.uk/news/uk-news/i-thought-daughter-just-clumsy-27314488 "I thought my daughter was just clumsy, but the devastating diagnosis changed our lives"

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