Through The Eyes of Jesus: Arianna

Thursday, August 8, 2013

Arianna

Hello Everyone,

So many times I have been meaning to post but life has been busy. AJ has not been hospitalized since last fall and we are so thankful for his good health. He has had one dilatation of his throat but he is already in need of another. We keep plugging away day by day.

I have lots of good updates to share but today I have something more important. We have spent much of the last eight months preparing for the adoption of our new daughter, Arianna. She is a sweet treasure that lives with Spinal Muscular Atrophy, type 2. She is ventilator dependent but is still quite the chatterbox.

Arianna's room is ready and waiting for her and so is her family. As final preparations were being made for her arrival, Arianna's social worker quit his job and the county of San Diego notified us that they were no longer planning to place Arianna in any adoptive home.

Every child deserves a family and we will advocate for Arianna the best we can. The support of the SMA community has been overwhelming. Thanks to them, they started a petition to bring Arianna home.

First, I would like to share with you the video San Diego child services made when they were searching for a family for Arianna. This was before she had a tracheotomy and placed on a ventilator. Arianna's video

Second, I would like to share the petition at Change.org. Please consider signing the petition to allow Arianna a home. All you have to do is click on this link and follow the simple directions: Petition to allow Arianna a family

Thank you so much for you support. We believe God has a plan for Arianna and we will continue to advocate for her.

Many thanks,

Scott and Barbara

2 comments:

MonicaAugust 8, 2013 at 7:17 PM
I am mother to two girls who had SMA, were vent dependent and lived and thrived in our home NOT a hospital. If there is anything I can do to help bring Arianna home, please let me know. I'm happy to help mobilize the SMA community and SMA experts (including a Neurologist/Geneticist who I know would go to bat for Arianna) This is a travesty. my e-mail is monicathemighty@gmail.com
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MonicaAugust 8, 2013 at 7:17 PM
I am mother to two girls who had SMA, were vent dependent and lived and thrived in our home NOT a hospital. If there is anything I can do to help bring Arianna home, please let me know. I'm happy to help mobilize the SMA community and SMA experts (including a Neurologist/Geneticist who I know would go to bat for Arianna) This is a travesty. my e-mail is monicathemighty@gmail.com
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What is Recessive Dystrophic Epidermolysis Bullosa?

It is a rare genetic disorder that causes AJ's skin to blister and tear with the slightest friction or contact. He can have severe blistering anywhere on his skin. Internally his mucus membranes and organs are affected. Due to blisters in his mouth and throat, he eats very little by mouth and receives his primary nutrition through a gastrostomy-jejunostomy tube (G-J) that is placed in his stomach and small intestine. He struggles with breathing at times as blisters form in his mouth, throat and upper airway. There is no cure for EB. AJ will live with constant pain and scarring. With each tear to his skin, the skin scars and eventually limits his movement. His fingers and hands will begin to fuse and curl together. The only treatment for EB is daily wound care and bandaging. Each day we unwrap his body, bathe him, treat his open wounds and then wrap him up all over again. AJ has many medical providers that help us with his care. He has a power chair that he uses in the community to reduce the friction on his feet. He also takes many medications to reduce the acid reflux that damages his esophagus and to help with the intense itching that EB creates. Children that do not succumb to infection, malnutrition or airway complications develop an aggressive form of skin cancer in their teen years. Children with AJ’s disorder are often referred to as, “Butterfly Children” as their skin is as fragile as a butterfly’s wing.