Fundraising mission to highlight rare disease

LIFE CHANGING Holly Parkin with her partner Sam Newman. Holly used her hair to cover her drooping right eye as her symptoms worsened.

Little did she know it was a symptom of a rare muscle weakness disease that would transform her life.

Last March Holly was diagnosed with Myasthenia Gravis (MG), a disorder of the junction between the nerve and the muscle, caused by the body’s immune system attacking a vital part of the junction.

The muscle weakness is predominantly in the eyes, but it also affects the respiratory system, facial muscles, hands and limbs.

For Holly, the diagnosis was life changing.

Her weakened facial muscles caused her face to droop and impaired the vision in her right eye, and weakness in her arms and hands has affected her work at her hair salon in Commercial Street, Batley.

She said: “You can go into a crisis – where it can affect your lungs and you can’t breathe, or your mouth, so you can’t talk.

“You’re like a rag doll.”

Dealing with her diagnosis was a challenge for the 31-year-old. Holly will have to use medication to control the disease for the rest of her life.

She has had to leave her Batley business and relocate to another salon, Pure Escape Spa, in Gomersal, on a part-time basis.

The steroids she takes as part of her medication have resulted in weight gain, and too much stress can make the symptoms worse.

She said: “I had no idea what MG was and when I read about it online it scared me to death.”

Holly contacted the Myasthenia Gravis Association (MGA), who put her in touch with a local support group and sent her an information pack.

She even discovered an old school friend had the disease.

“Her mum rang me and was really reassuring and answered all my questions,” she said.

“I’m a positive person and I do think I’m a strong person but even I had a wobble.”

Holly, now of Skelmanthorpe, is keen to give something back and hopes to raise £3000 for the MGA.

She will host a charity dinner at Zucchinis in Bradford Road, Batley, on March 25, featuring a charity auction with prizes donated from the Dewsbury Rams, V Boutique and Duvalay.

Tickets for the four-course dinner cost £25. To book, or for more information, call Holly on 07730325138 or visit the Muko Reed Hair Design Facebook page.

Holly’s partner Sam Newman and his friend Mark Carter will also run the London Marathon in April to boost Holly’s fundraising.

To sponsor them, visit Holly’s charity page at justgiving.com/Holly-Parkin.