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A few thoughts about Endings and Beginnings and Middles

June 13, 2017

Dear PURA family:

As most of you have heard by now we have gained another PURA angel. Darren was a funny and a kind soul who will surely look out for and comfort his mother and family.

The passing of a child is simply one of the most tumultuous things that any human being can experience. It is not the natural order of things, and we mourn the loss of their presence as well as the optimism of their futures. Each of our children are special and unique expressions of humanity. Each is not just one of a kind, but our PURA children are each 1 in 9 billion!

 

Many of our kids have similar symptoms and overlapping challenges. But none of us have the same set of circumstances; whether it’s differences in gait, nutrition, movement control, seizures, or the differences in what makes them laugh and giggle. I want to remind you all of these obvious things and to also say that even though we are making great progress with research, there is still a lot that we don’t know. When we gain one PURA angel, it does not mean that we will gain others the same way. We have had several parents ask if Darren’s passing constitutes a pattern, or if this is a clue about life expectancy. Given the circumstances around our angels to date, there does not appear to be a pattern, nor does it mean there are expectations around life expectancy or quality. There is so much we don't know about this condition, so much we have still to learn.
 

Of course with this condition there are harder days and easier days. Of course every one of us will worry about the future of our children: we’re parents and it is in our nature. We have many more reasons to be joyous and optimistic about our children than we have reasons to worry. Our children are with us now. They are growing. They are developing in their own ways, and they are as unique as we could ever want any child to be. Our children clearly love. They love us, their parents, they love their caregivers, and they love being with other children.
 

So with a heavy heart, as we say goodbye to Darren, let us also look forward to seeing him again. Let us equally look forward to the next hug we give to our own PURAperfect kids today! The next hug, the next embrace is the perfect reminder of the sweetness of this life. We have that sweetness in our hands right now, and we can look forward to that sweetness forever.

 

Dominic  
PURA Syndrome Foundation President

 

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The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis , management, and health . Information about PURA and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication , some facts may change later .