Amy Foley, 28, from Midleton, Co Cork, has Ehlers Danlos Syndrome, a genetic, incurable connective tissue disease that affects the joints, muscles, bones, blood vessels, and vital organs.
She is on 26-28 medications a day and was recently devastated when her doctors told her it was no longer safe for her to become pregnant.
“One thing that has kept me fighting is my determination and my strong maternal desire to become a mother.
“My fiance and I have been devastated recently because it is no longer safe for me to become pregnant for so many medical reasons. We are grieving the loss of sharing that experience together as two people who want to be parents so very much,” Amy said.
The couple were considering adoption “something we had always planned to do after we had a child of our own” but to be considered “worthy” of being adoptive parents, they need to marry and have a home that they could share with a child.
While her fiancé works full time, Amy, who graduated with a first class honours diploma in Social Science, is finding it extremely difficult to attain permanent part-time work because of the demands of managing her conditions, which also include Postural Tachycardia Orthostatic Syndrome — an abnormal increase in heart beat when changing position that can cause a significant drop in blood pressure — and Mast Cell Activation Disorder, an immunological condition that can lead to anaphylaxis, and has done so in Amy’s case, requiring her to carry an EpiPen.
Amy travels to London every couple of months for assessment since she was formally diagnosed in 2013 and although she has campaigned publicly for financial assistance, she has to rely heavily upon fundraising within her own community.
Now the odds are also stacked against her chances of ever adopting a child because she says she runs the risk of losing her disability allowance and her medical card if she moves out of home and in with her fiancé.
“My fiancé and I do not live together as I have not been working full time to enable us to move out of our parents’ homes. I have been researching our options and I have discovered that if I move in with my fiancé or get married, that I potentially lose my disability allowance, which is means-tested, and potentially my medical card as he works full time,” Amy said.
She would be lost without her benefits, particularly her medical card, given the frequency of hospital visits here in Cork since her diagnosis, and also in light of the high daily consumption of medication.
“What I want to ask politicians is ‘what does a woman in my position do when they want to move forward in life with their partner of nine years?’.
“Do we, as a committed couple, have to spend our futures living separately and never having the opportunity to be parents?
“Will I be trapped not only by my conditions but also by the welfare system?” Amy said.
While pregnancy is a high-risk strategy for Amy to pursue, she feels forced into reconsidering this option because of her fear of losing the entitlements she considers invaluable should she embark on the adoption route.
“The complications that I potentially face while preparing to fall pregnant, as well as during pregnancy, could potentially undo all the intervention I have received in the UK,” she said.
Amy is appealing to whoever becomes social protection minister in the new administration to ensure people like her are not left “between a rock and a hard place”.
“I like to think I am a naturally optimistic person but right now I am being pushed so hard against the wall. All I really want is a fair chance to live life as normally as possible without the threat of losing state benefits that are a lifeline in my case,” she said.
Amy’s plea comes as experts in rare diseases prepare to gather in Dublin Castle next Monday morning, February 29, for a major conference to mark International Rare Disease Day.
Attendees will be given an update on progress of the National Rare Disease Plan for Ireland 2014-2018 and progress on the clinical programme for rare diseases.
An estimated 300,000-plus children and adults in Ireland are impacted by c6,000 rare diseases.