#RareDisease Day: Impossible situations create remarkable people


Original post from the blog of Special Needs Jungle

An extract

‘……………Today is Rare Disease Day and during the past week we have been featuring a number of #Rare Disease Dayfamilies who have been affected by rare conditions. Even if you’re not especially interested in the field as a whole, you cannot fail to be moved by the courage of those who face sometimes impossible odds for the survival of their child and yet still manage to help others with similar illnesses.

This isn’t confined to people with rare diseases; I am amazed by the refusal of many people burdened with so much difficulty and daily trauma to just turn inwards and grieve for their own difficult circumstances and disrupted lives.

I understand it, this need to help others. Although my own children do not, thankfully, live with terminal conditions or need 24/7 nursing care, helping others can be life-affirming, knowing that whether or not your actions will help your own child, you may alleviate the suffering of someone else’s. It can also give you back an element of feeling in control of your destiny, when you act to change your impossible situation and help others at the same time.

There is also the sense of obligation to help those charities who have helped support us or, as many do, set up support organisations for similar families where none previously existed. Increasingly, in these emerging times of crowdfunding and the patient advocacy, families are even setting up research and development non-profits to push forward progress into curing the conditions that afflict their loved ones. …………………’

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