i've never been good with words, and even worse when it comes to a difficult/sad/uncomfortable situation. i'm skipping my usual fun and carefree “five on friday” post to discuss a matter that's been weighing heavy on my heart.
menkes syndrome.
just googling the disease is enough to make you break down – let alone the thought of it happening to an innocent infant. no cure: i can't imagine the pain mary and alex fish felt when they were told their son teddy has a disease - one that has no cure. the chances that teddy will live past his third birthday aren’t in his favor, but looking through his instagram feed you’d never know. that is one smiley baby. teddy has spent many days of his life in and out of doctors offices and seeing specialists – more than i have in my 28 years. teddy’s parents goal now is to surround teddy with as much much love as possible during his time on earth. as mary says, “make today happy for teddy, he deserves it.”
mary and alex have since put their virginia home on the market and moved back to boston, massachusetts to be near family and loved ones. with medical expenses amounting by the minute, the fish’s friends have set up the teddy fish fund to alleviate some of the financial stress. today i'm telling teddy's story, but it doesn't pay their bills, and it doesn't cure menkes. my hope is that menkes will be better known, leading to additional research and the discovery of a cure. maybe a cure for teddy.
we’re all with you, teddy. to read more about teddy’s journey or offer encouragement to the fish family, visit mary & alex’s caring bridge page. if you would like to make a financial contribution, please click here.
#FUmenkes
1 comment:
Being good with people masks any insecurity you might have with words. This story had me sobbing and donating. Thanks for sharing.
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