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Mending Mateah's Heart

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December 12, 2013 was the beginning of our trip down the road less traveled. Mateah was three years old when she was diagnosed with Rett Syndrome. Rett Syndrome is a neurodevelopmental disorder that primarily effects little girls. This caused Mateah to lose most of her ability to speak, to walk independently and to use her hands purposefully. She uses a special walker that helps with hip placement while she walks as well as glasses, a wheelchair, and a borrowed communication device that costs an upward of $5,000.00! Our dream would be to one day own a Tobii communication device for Mateah.

   Not being able to talk is different from not having anything to say. Mateah is opinionated about her life, what she wears, wants to watch or even what she wants to eat just like every other four year old. She just has a more difficult time communicating it to the world. Her mommy, daddy, big sister, aunties and grandparents are her advocates. We help other people understand what she wants them to know.

   Mateah requires 24 hour care, insomnia and the inability to relax her constantly moving body creates many long nights for her parents. She receives a cocktail of homiopathic medications as well as a seizure medication and vitamins that greatly improve her quality of life. It goes without saying that these medications alone that help Mateah live her day to day life are very expensive. Mateah is on a waiting list to receive funding through the state of Wyoming, she has yet to be funded- this can sometimes take up to FIVE years to receive. Shiloh, Mateah's mommy cannot work because of Mateah's constant need for special care and no way to pay for respite care.

   About six months ago Mateah was diagnosed with another disorder called Wolf Parkinson's White Syndrome. This is when there is an extra electrical pathway in the heart. This was thought to have been a harmless diagnosis upon its original discovery. However, doctors suggested that Mateah go to Colorado, four and a half hours away, to get the pathway ablation done to make sure it wasn't covering up a bigger more dangerous issue related to Rett Syndrome called a long QT.

   On October 14th, 2014 Mateah went in to get the extra electrical pathway frozen shut. During the ablation the Doctor noticed Mateah's heartbeat was erratic. The next day they took Mateah back into surgery to place a pacemaker. It was decided that because she was so small they needed to open her chest to place the pacemaker around her heart. This was to help her heart beat steadily and more regular. They kept Mateah and her parents in the hospital for several days with both surgeries and recovery time. A few days later Mateah was released from the hospital and headed back home on another four and a half hour road trip.

   Four days later they had to return once again to Colorado to check on the pacemaker and see if it was doing it's job. To everyone's surprise Mateah had an abundance of fluid collecting around her heart making her heart struggle to beat. They rushed Mateah into an emergency surgery to drain her chest. That drain would remain in her chest for 5 days, all the while her parents stayed right by her side. The drain was finally removed and she was discharged from the children's hospital. She's not home free yet- Mateah's doctors have requested that she and her mom stay in Aurora, Colorado for another few days.

   Mateah and her family have been through an unbelievable amount of complications, pain and frustrations but Mateah's strength and Gods peace has pulled everyone through this stressful and very scary time. Mateah continues to keep a smile on her face!

   In only a matter of two weeks Mateah's procedures and hospital stays have racked up substantial medical bills, not to mention the medical bills she had before the ablation, pacemaker and drain.

   In August 2014 we put on a fundraiser 5k that raised $15,000 towards Rett Syndrome Research through Move it Move it for Mateah. Mateah and the Esterline family did not receive any money at all from that fundraiser. Every penny went to Rett Syndrome research to help find a cure for the thousands of little girls who live with Rett syndrome.

   I am setting up this page for the Esterline family's medical bills, traveling expenses to and from Colorado, and monthly medications that help Mateah live the best life she can live. My goal is to raise them $10,000

   Asking for money is never easy but this little girl deserves to have the best medical care available without her parents worrying how they will pay for it, keep their house, or provide for not only Mateah but also their oldest daughter, Asyiah. If you find it in your heart to give to this beautiful family and the bravest little girl then please do!

*** If you want to know more about Mateah and her journey please visit
Move it move it for Mateah on Facebook.

Feel free to share Mateah's story- this little Mighty Mouse needs our help. #speaklife #compassionmoves

Proverbs 3:5 ESV
Trust in the Lord with all your heart, and do not lean on your own understanding.

Jeremiah 29:11 ESV
For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.

Psalm 147:3 ESV
He heals the brokenhearted and binds up their wounds.

Proverbs 16:24 ESV
Gracious words are like a honeycomb, sweetness to the soul and health to the body.
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Donations 

  • Alisa Kay
    • $25
    • 10 yrs
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Organizer

Savannah Sutton Schadegg
Organizer
Casper, WY

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