Akaiya and I have been members of SOFT for 6 years now and greatly appreciate everything we have learned, and all the support we have received from the many families. For the first time ever, SOFT is having a walk-a-thon - the Stroll For Hope. We are excited to be a part of this event and eager to help an organization that has helped us so much over the years.
Akaiya was born with a condition called Trisomy 18. This means that she has three copies of the number 18 chromosome in each of her cells. This extra "information" leads to many different anomolies and delays. Akaiya was a relatively healthy little girl until about a year and a half ago. She started having seizures, and shortly after started refusing to eat. She is now tube fed and on several different medications trying to control her seizure condition. All the medical issues aside, Akaiya is a joy to be around. She loves music, she loves to make noises (very loud noises!), and most of all she loves to laugh! Akaiya has a goofy smile on her face most of the day - even when she's sleeping sometimes! She has taught her family so much, and continues to show everyone around her what a tough little cookie she can be!
The SOFT Conferences provide an amazing experience for families affected by a Trisomy diagnosis. You are in an environment where your child isn't looked at as "odd" or completely overlooked because they aren't "typical". Families are welcomed and accepted and made to feel like they are a very important part of a much larger family. That is why this organization is so important to us. That is why it is so important for us to do our part to make sure conferences are able to happen for the future families facing a Trisomy diagnosis.
Kelly & Akaiya
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