Orphans with Arthrogryposis

There are kids with Arthrogryposis all over the world who wait for a family to call their own. Every child should have a Mama and Papa to love them. Sadly many kids will never know the love of a family as they will live out their shortened lives in institutions. The children posted here are from Reecesrainbow.com If you can't adopt, you can donate to their grants on reecesrainbow.com Don't leave them to die in institutions.

Thursday, November 29, 2012

A history of sweet Henry's adoption, in memorial

Henry's listing photo from 2011.
Sweet Henry
met his Mommy
in an orphanage
last year.
He was tiny
even tinier in his daddy's arms
and his family loved him.

We first posted about Henry on December 17th. He was diagnosed with arthrogryposis and was just too cute. A few months of advocating went by and it got to where someone would say "Henry" and a few people around them would say "awww." Tasha (now Ember) was our other little AMC baby and she had just found her family earlier that month. We all felt Henry was next to find his family. It wasn't until March 4th that we found out someone had commited to him, but we had no clue who they were at that point. It was exciting. Thankfully the Dobrovits didn't make us wait long and shared their journey with us so we could follow. They let us know when they were traveling and let us share their joy (and pictures) in an old post found here. Henry came home on September 9th, 2011.

They even decided to keep his listed Reece's Rainbow name. So "Henry" legally became Henry. When we told Carla she was making it too easy on us. She replied, "Glad I could make it easier for you ;-) we had planned on a totally different name, but as we kept using Henry it just kept feeling more right, it was Pauls' grandfather's name (altho he never met him) and then when we saw him in person we knew it was right!!!"

Henry came into an awesome family.

And a fun family. :)
His family not only provided so much love for this new little baby, but they also continued to adovcate for so many other children.
And Carla became an active member of many support groups for new moms adopting special needs kiddos for the first time.

On September 30th Carla blogged that she had just found out Henry did not have arthrogrypsis. In fact instead of the stiff joint contratures indicating AMC, he instead had "wobbly" joints. On October 6th the family had an answer: Larsen's syndrome. Treatment and long-term functionality is the same for Larsen's and AMC, but the joints in Larsen's do the opposite of what they do in AMC.
From the Dobrovits blog:
Let's go down the signs and symptoms [of Larsen's syndrome]:

* Joint dislocations (especially of the hips, knees and elbows) - yep, all of the above dislocated on both sides
* Hypermobile joints - the child could be a contortonist
* Depressed nasal bridge - that just means he has a cute tiny nose with a tiny upper lip
* Prominent forehead - I teased Paul when we met Henry that Henry had his daddy's hariline ;-)
* Widely spaced eyes - which are absolutely adorable
* "Spatula-like" thumbs - we wondered if these were a Ukranian thing or something else, now we know
* Cleft palate - check. But it is not too bad of a cleft. The surgeon says one procedure with an overnight hospital stay and he will be good!
* Curved spine - yep. big time. 110 degrees. probably his most severe problem and one that will need serious surgery (think metal rods and body casts) in the not-too-distant-future
* Cardiovascular anomalies - no. thank the good Lord. Henry's heart seems to be just fine!
Because of the similarities the family became advocates for both AMC and Larsen's syndrome, educating us all about it which we are very thankful for.
But once an AMCer, always an AMCer. ;) We continued to love our Henry. 
Because of the severity of Henry's condition, it became clear that without adoption Henry would have died alone in a crib. A terrifying, horrible thing for a baby. Around the start of the new year Henry had officially overcame two rounds of croup, pneumonia and RSV. There's no doubt that if left in the orphanage with little to no medical care he would not have survived to see 2012. Adoption literally spared and prolonged his life. And now we know it added much more than 14 extra months to Henry's life, it flooding it with love.
Henry passed away after complications arrising from a much-needed surgery. It was a major surgery they knew was coming since before they brought Henry home. It was a surgery delayed a couple times, which was frustrating, but now we know those delays would give Henry a bit more time with his family. Even though 14 months in a loving family is not nearly enough, it's better than 13. Or 10.
He went from one pair of loving arms to Another. He was given the amazing gift of a family and a loving mom. He is missed. He is grieved. And we are heartbroken. But we don't grieve the orphan, we grieve a beloved son.

Through tears and grief Carla texted a member of Bring Hope and asked that people support another family adopting a little one with Larsen's "in Henry's name." That family is in Henry's birth country right now finishing the adoption, but were short on funds. Before we could even blog about it that family was fully funded in less than 24 hours as people poured out their love for Henry without prompting. Another little girl with Larsen's is coming home to be loved because of Henry and his family. Amazing. People go their whole lives without having half the impact on the world that this one little two year old has had.
The family has a lot of hospital and funeral costs. If you would like to donate to them to offset those costs you can use their PayPal account which goes directly into their pocket: Dobspc@aol.com. Also another family has set up a ChipIn for them here.
Now the family is asking that any extra donations be made to RR's Voice of Hope which helps orphans like Henry, orphans like all the ones with AMC we advocate for and for many, many others to find their families.
Henry, you are missed. Right after you were adopted we saw AMCers Gage (Ethan), Moira (Victoria) and Ethan (Cameron) all find families. Adoption paves the way for other children to be adopted, and I'm sure you made a difference. Your life had so much meaning and your family have helped so many others. We'd like to think that in Heaven your back is straight, your joints are strong and you are running and jumping around. No more sickness, no more struggles. Enjoy yourself sweet one.

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