Musings of a Marfan Mom

Erin’s Story

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Today {May 22} is my thirty-first birthday. I am the eldest of four – and the spontaneous mutation of the lot. I like to say ” I was the only one who was planned- and this is what they got!” I was lucky in that my Dr. V noticed my oddities very soon and an ophthalmologist confirmed the worst. I was diagnosed before I was two years old. Marfling became almost my almost invisible friend. When asked to be part of games as a child I would say either Marfling says no or ‘my cardiologist frowns upon such things- sorry’. When I was young unless it became a need – I never mentioned MFS to others – it was too complex to explain. But now as I’ve gotten older -Marfling and Marf are two nicknames I answer to gladly. I explain all about it to the curious -and if I suspect it in someone I know – I mention it openly. I have nearly every symptom that you could have – luckily beta blockers since I was five have protected my heart. But the scoliosis,joint displacement, dislocations, epilepsy, fibromyalgia, kidney, gall bladder, and eye surgeries and more came along. As well as emotional troubles – anxiety and bipolar disorder. But now I survive it all and share whenever I can. Literature , verbal support, hope for those younger than I. I have degrees in childhood development, education, English Literature – and I use them all to help others. I am not a Marfanoid creature – I am a MARFLING – which denotes how fragile yet strong I am. I have mein klein broer Alex Broadway in South Africa – I believe every Marfling has a duty to find a younger Marfling who is coming to terms with this disease and give them the most important weapon we have – HOPE.

I am a daughter, sister, aunt, friend and Marfling. I am an author, poet, actress, and constant community volunteer, and a Marfling.

Being a Marfling shall hopefully never stop me – save from driving and being and astronaut. [Which is fine by me]

I store my writings at http://poetryandprose-end.webs.com/ and I build websites like www.acac-theater.com and http://lpmrailroad.webs.com/

Erin N. Dalton –
Spontaneous Marfling – Virginia =)

Please, support the NMF by casting a vote for them in the Chase Community Giving Campaign. Any money won will go to support programs that promote early diagnosis.

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