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The anguish of the mother by daughter, 7, whose immune system attacks her own body



A woman whose daughter suffers from a rare and incurable condition that sees her immune system attacking her muscles and joints, said her "heart breaks" because she can not push her away.

Abbie Lee said that her daughter Tamara Williams, seven, was diagnosed with juvenile dermatomycosis last October at Alder Hey Children's Hospital after a series of strenuous and sometimes painful trials.

Autoimmune disease, which affects between five and 10 people in every million, is caused by the body's immune system attacking its own skin and muscles.

Miss Lee has talked about the International Day of Rare Disease because she wants people to be aware of the condition and is raising money for vital research.

Tamara, from Holyhead, suffers rashes, pain, tiredness and muscle weakness that prevent him from continuing with his friends, since the disease attacks muscles, joints and even stops breathing.

Miss Lee said: "I see how you can not continue with your friends. I see the weakness, the swelling, the pain you have to endure. The other day your friends were left out but had to go in because I was too tired.

"She finds out that she is not the same. She is a normal child, but at night she is very weak. Although she becomes good, it is not."

The mother of three Miss Lee, aged 24, and father James Williams, 28, had to go and win with her daughter for her family doctor and with Ysbyty Gwynedd, Bangor, and was an acute eye doctor in the hospital that I referred to Alder Hey.

Tamara suffered six months of problems that began with eruptions. Her parents thought she was having a reaction to the hot weather.

After being "in and out of GP surgery" every week, she was sent to Ysbyty Gwynedd and the doctors initially thought that the problem was viral. However, a doctor noticed that Tamara had swelling and was referred to the Liverpool-based hospital for further tests.

(L-R) Kaira Williams, James Williams, Nova Williams, Abbie Lee and Tamara Williams
(L-R) Kaira Williams, James Williams, Nova Williams, Abbie Lee and Tamara Williams

Miss Lee said: "Tamara was there for two weeks for the first time and underwent blood tests, X-rays, MRI scan, pulmonary function tests, skin grafts, and a muscular biopsy. She was so sick.

"His latest trials have been MRI, muscle biopsy and skin grafting. I will never forget that day that ruined him while he was surrounded by the theater. I cried a lot. It was horrible. I still screamed now.

"It's so hard to enter your head, there is no cure. My heart breaks I can not remove it. I never heard of juvenile dermatomyositis until Tamara was diagnosed."

Some of the complications of the disease may include breathing swallowing problems, shortness of breath and, in exceptional cases, may be associated with certain types of cancer.

Treatment usually involves steroids, physiotherapy, and immunosuppressive therapies, which can increase the risk of infection. The condition is that it normally affects females.

Tamara's mother wants parents to be aware of the condition and trust in their instincts.

She said: "As a parent you know when things are not right. So, it feels things are not good to talk and go with your gut instincts."

Abbie Lee's resource can be found here

More information on juvenile dermatomycosis here.

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