Hello Family and Friends!
Welcome back! We can't believe another year has passed! We are here to celebrate Juliet turning SIX!!!!. So here we are. Let's raise awareness for $22 for 22q13!
As most of you know, our Juliet had a major medical setback. Juliet was admitted to the hospital for 45 days in March 2022. During her admission, we experienced Juliet's first regression. Juliet could not sit up, make strides in her walker or eat orally. Therefore, Juliet had a Nasogastric tube (NG tube) placed, which revealed it was unsafe for Juliet to eat safely by mouth. During Juliet's hospital stay, she had a Gastrostomy tube (G tube) placed and now consumes 100% of her food via gtube. With this regression, Juliet has to work twice as hard to relearn her basic skills to move her legs and arms and learn how to eat by mouth. And if you knew Juliet before March, you know Juliet loved to eat all food. The more flavor, the better! :) Since her discharge, I am happy to announce Juliet is actively participating in eating purees for oral gratification. She is surprising us every day with new skills in physical therapy as well.
Juliet has started hippotherapy. Hippotherapy comes from the Ancient Greek words meaning "horse" (hippos) it utilized as a treatment tool in therapy and is derived from evidence based practice and sound clinical reasoning skills. Using intentional movements of the horse, sensory, neuromotor, and cognitive systems.
Over the summer Juliet had the opportunity to trial a Tobii Eye Gazing device. Juliet is a natural using her eyes to communicate we are looking forward to begin using this device for communication. P
She will continue to climb those mountains. Juliet has the best village of support behind her, and we couldn't be more proud of our girl.
We know that now more than ever, times are tough. It is because of you that our non-profit foundation can rise. We thank you from the bottom of our hearts for your support. With your help, we can continue PMS research in hopes of one day finding a cure.
Here is a little background information on Phelan McDermid Syndrome so you can have an understanding of what PMS is. Thank you for your time in visiting our $22for22q13 campaign page!
Phelan McDermid Syndrome (PMS) is extremely rare and caused by a deletion on the 'q arm' of the 22nd chromosome. PMS is sometimes referred to as 22q13 Deletion Syndrome. PMS's various symptoms cause a wide range of medical, intellectual, and behavioral challenges due to genetic changes. There is currently no cure or treatment specifically for PMS. It is estimated that 1% of people with autism have PMS. This means that 1/8,000 - 15,000 (including 22q13.3 deletions and SHANK3 gene variants) have PMS.
Because the genetic changes vary, the symptoms of PMS vary too. This can cause a wide range of medical, intellectual, and behavioral challenges. The most common characteristic in those with PMS is intellectual disability of varying degrees, such as delayed or absent speech, symptoms of autism spectrum disorder, low muscle tone, motor delays, and epilepsy. Although there currently is no cure or treatment specifically for PMS, we know how to manage many symptoms. Researchers are working hard to improve our knowledge of PMS and find drugs and therapies to help people affected by PMS.
On behalf of Juliet, our family, and the entire PMSF family, thank you for your support and love! We couldn't do this without you!
Lots of Love,
The Calero Crew
Jeff, Juliana, John, Juliet, and Jake
Donations can be made on this fundraising page.
Make your donations 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.
Rare is beauty