We’re the Carters from Texas and this is the story of our little girl Sloane.
Sloane was born fearfully and wonderfully made on July 7, 2015. She came into the world in dramatic fashion with an emergency c-section and spent her first 12 hours in an oxygen concentrator after having to be intubated to clear her airway.
From early on she was just a little different, but as first time parents it took us a little longer to see that our precious girl was not following the normal trajectory of development.We were told over and over again that she was likely just delayed as a result of her traumatic birth experience, but deep down my mom’s intuition was afraid it was something more…but I didn’t dare admit it aloud.
We had genetic testing done in the summer of 2017 and were disappointed after 8 weeks of waiting to hear that the sample had been lost and the test never run. We went to get tested again and waited and prayed. Our geneticist’s parting words to us were “there’s nothing wrong with that child”.
In October 2017 we received the call that changed our world. Sloane was diagnosed with Phelan-McDermid Syndrome, an incredibly rare genetic disorder caused by a missing piece of her 22nd chromosome.
We’ve now been walking this road for awhile and our life is much different that we ever thought it would be. Beautiful, blessed and wonderful, but different. Phelan-McDermid often comes hand in hand with an Autism diagnosis and Sloane received hers about a month after her initial diagnosis. Her diagnoses give her a complex life full of therapies, doctors appointments, medical studies and more tests than a little girl should ever have to endure. It means she cannot relate to and play with other children normally because relationships are hard for her, her first friends have been her many therapists.
This summer we were blessed to attend the bi-annual International Phelan-McDermid Family Conference in Dallas, TX. We were able to connect with other families and kids and attend many seminars, presentations and round-table discussions. One of the sessions featured service dogs from 4 Paws for Ability and we were blown away by the skills their dogs have and the stories of how they change the lives of the children they’re matched with. We knew before we even left the room that we had to get Sloane on their wait list!
Children with Phelan-McDermid and autism have no understanding of danger and are prone to injury from running off, this is even more a concern with Sloane because she also has an extremely high pain tolerance and an inability to regulate her body temperature so she gets dangerously overheated in warm weather. Sadly, individuals with Autism have a lower life expectancy because of their inability to identify danger, so we will pursue anything we can to help protect our precious girl!
To get a service dog we have to raise $17,000, though on average it costs 4 Paws $40,000-$60,000 to raise and train a dog – if you can help us with a donation in Sloane’s name, please visit the 4 Paws Donation Page (http://www.4PawsForAbility.org/donate-now). Include Sloane’s name on the donation as instructed in the “Description” field of the form on the second page of your Authorize.net donation. Donations can also be made by mailing a check with Sloane’s name on the memo line to:
4 Paws for Ability
In Honor of Sloane Carter
253 Dayton Ave.
Xenia, OH 45385
We are so grateful for everyone who has contributed to our fundraising efforts!