Delvin Vintage Club will host a Halloween Fancy Dress Party at The Blue Hackle, Delvin on Sunday 30th October.
Admission to this annual event will be €5 per person and this year, proceeds will be going towards the purchase of an experimental drug which could help a Mullingar family in their fight against a very rare disease.
Please mark this date on your calendars now and give as much as you can.
Charlotte is 47 and lives with her husband Declan and their son Dylan in Mullingar. Charlotte was initially diagnosed with multiple sclerosis (MS) but after a long and painful year of tests including MRI scans and lumbar punctures, she was diagnosed with Degos disease in February 2015..
Charlotte is thought to be the only person in Ireland with Degos disease (also known as malignant atrophic papulosis) and one of only 50 people worldwide known to be living with the condition.
The disease has two forms: benign cutaneous Degos disease and systemic Degos disease. The former leads to small and medium-sized arteries becoming blocked, restricting the flow of blood to affected areas, and causing skin lesions that can last anything from weeks to years. The latter is most frequently characterised by internal lesions on organs such as the small intestine and it has a high mortality rate. It is this form that Charlotte has developed.
Charlotte’s husband Declan explains:
In Charlotte’s case she has lesions on the brain, the stomach, the gut, on one eye and also on the nerves throughout both of her legs. She has no sense of feeling from the waist down, whatsoever, and this makes it very, very difficult to walk.She cannot feel the ground under her at all. Due to the fact that the disease has become so prevalent, she needs the use of crutches to help her get around. Her muscles have regressed quite a bit due to lack of use, and she is particularly weak when standing or walking after any great level of time.As Charlotte has the disease on the brain there is an elevated chance that this will lead to minor or major strokes and she would have little chance of fighting off these strokes as her condition deteriorates.
In Charlotte’s case she has lesions on the brain, the stomach, the gut, on one eye and also on the nerves throughout both of her legs. She has no sense of feeling from the waist down, whatsoever, and this makes it very, very difficult to walk.
She cannot feel the ground under her at all. Due to the fact that the disease has become so prevalent, she needs the use of crutches to help her get around. Her muscles have regressed quite a bit due to lack of use, and she is particularly weak when standing or walking after any great level of time.
As Charlotte has the disease on the brain there is an elevated chance that this will lead to minor or major strokes and she would have little chance of fighting off these strokes as her condition deteriorates.
Experimental Drug There is a potentially life saving and experimental drug called Soliris (FDA Approved) which has been used in cases similar to Charlotte (predominantly in the United States). This has resulted in significant benefits for patients and in some cases, has proven to be life saving.
The problems are that the drug is experimental and expensive at approximately €430,000 per annum.
The Irish Authorities have not authorised the treatment due primarily to its cost. The Charlotte Connolly Trust is working to raise funds to trial this drug on Charlotte to see if the treatment will work and potentially save her life.
There is no guarantee that the drug will work in her case but as Charlotte’s condition continues to deteriorate, the family feels that they have to give it a try.
The trust has been setup with the intention of raising sufficient funds to pay for three months’ medication and a GoFundMe page has been set-up. It can be viewed here.
