We are celebrating Wyatt being seizure free for one year by hosting our first $22 for 22Q13 campaign.

This campaign is for the foundation of Wyatt's rare genetic syndrome. A syndrome that, even after being diagnosed four years ago, is continuing to grow and learn. When Wyatt was first diagnosed with Phelan McDermid Syndrome there was limited information at that time and we were only handed a single piece of paper with information. At that time there were only 1200 confirmed cases. Today we now have 2255 individual diagnosis' of Phelan McDermid and our circle is growing daily!

But, we are still only 1 in 19,680,501 and only 389 Phelan McDermid cases also have Ring 22. Wyatt is one of those 389 cases.

To date, Wyatt has faced many set backs but is also making a lot of strides against Phelan McDermid Syndrome. We have been able to remain seizure free for one year, two years in February, with the help of medications and extra precautions. We hope to continue that journey and have more assistance with the seizures with our wonderful team of doctors, medications and Wyatt's service dog that we will receive this winter. Wyatt is also fighting against the affects of multiple arachnoid cysts which are non-lifethreatening cysts that contribute to having seizures. Wyatt still faces some difficulties in walking long distances such as the zoo or state fair but he is really enjoying riding in style in his Convaid Cruiser Wheelchair. This has also come in handy while traveling and shopping to avoid a flight risk!

Depsite all his set backs, Wyatt is continuing to make great strides with the help and guidance of so many people. While Wyatt is only measuring at the age of a one year old on the developmental scale he has been able to do things we never thought we would see him do. He is really enjoying being independent and having minimal assistance in daily tasks. He has mastered finding his own snacks, traveling across a room with an item in his hand, asking for something with purpose, taking showers, dressing/undressing and putting himself to bed. Wyatt has also been exploring new foods, textures and tolerating the demanding schedule of a kindergartener very well! Wyatt is also gaining new friends and new ABA in home therapists. Whom we hope to learn more skills from to help continue the road of independence and learning for Wyatt.

The Phelan McDermid Foundation continues to grow and progress daily. We work daily to educate and support our fast growing community. The PMSF has launched several programs around the world to help meet the needs of families including:

• A consulting service that enables PMS experts to give treatment advice via video to doctors around the world who are seeking help in treating Phelan McDermid families
  • This is a network we heavily relied on with each new specialist we gained and with the physicians in the ERs at our local rural hospitals. It really helped us and helped them to better understand Wyatt and his medical needs
• A webinar series to help families gain much needed information on the best ways to care for themselves. Caregivers tend to spend all their energy and time in caring for their children they neglect their own needs and health
  • I love listening to these in the car on long drives to St Louis or while cleaning the house. It's rewarding to be able to regroup in order to be and give your best.
• Training for regional Phelan McDermid respresentatives to help them better meet the needs of families who have recently learned of the PMS diagnosis and are in shock, feeling vulnerable, lost and unsure of the next steps.
  • This community has been very helpful to us. Being able to find famlies within your area, feel less of a number and more of a family. And to share physicians to help raise awareness and treatment plans. The local retreats also help families feel understood and accepted in this little world we live in daily.

Because of you generous gift, the Phelan McDermid Foundation has been gaining international recognition with research facilities wishing to study and do trial tests on PMS. This includes the National Institute of Health. The foundation has also been able to host regional and international conventions where families can come to learn, educate, connect and receive resources . There are also numerous specialists and the genetic founder of the syndrome, Katy Phelan, at these conventions. It is our goal to one day attend these events to meet the faces of families we see daily on Facebook.

You are making a difference and being a voice for Wyatt by helping raise awareness and independence with Phelan McDermid Syndrome with just sharing our story and our $22 campaign for 22Q13. Help us celebrate Wyatt being seizure free and supporting the Foundation that has been everything to us since the diagnosis.

Thank you,

Ashley, Brian and Wyatt Partridge

Donations can be made on this fundraising page or you can send a check made payable to: The Phelan-McDermid Syndrome Foundation and in honor of Wyatt Partridge in the memo.

Phelan-McDermid Syndrome Foundation

200 Capri Isles Blvd Suite 7F

Venice Florida 34292

Make your donation go twice as far! Many companies match donations made by their employees to our organization. Reach out to your HR department to see if they are one of them. Our tax ID # is: 04-3673104