Hayden Faith was born November 5th, 2021. Shortly after birth, her doctors suspected there may be something wrong. She was born with contractures (clenching of her hands) and had difficulty feeding. After multiple tests in the hospital to understand what may be causing her issues, we received the results of her full exome sequencing that she had been diagnosed with Schaaf-Yang Syndrome (“SYS”), a rare genetic disorder.

SYS is a genetic disorder caused by a disruption in the MAGEL2 gene in the 15th chromosome. Some of the characteristics of SYS include low muscle tone as an infant, infant feeding difficulties, joint contractures, sleep apnea, developmental delay, and a higher prevalence of intellectual disability and autism spectrum disorder.

While in the hospital, she had a surgery to place a feeding tube due to her feeding difficulties. After spending 35 days in the NICU, we got to bring our angel home on December 9, 2021. Since being home, she has been loved by family and friends and been cared for by a wonderful team of doctors and therapists. She has weekly physical, occupational and feeding therapy appointments and has had more doctors appointments and procedures than most people have in a lifetime.

In her first year, Hayden worked hard and made great progress. She hit several developmental milestones, including sitting up unassisted. She loved tummy time and her favorite activity was feeding small amounts with a spoon and all the new tastes to explore!  She gained comfort by snuggling her blankets, enjoyed watching her siblings run around (especially the four legged ones), looking in the mirror and sleeping on people. Smiles started to come more frequently that brightened anyone’s day.

February 2023 Update: Hayden has continued to progress and is developing at her own pace.  She works hard each day and now has twice weekly appointments of each physical, occupational, and feeding therapy.  Most of her nutrition is still coming from her feeding tube, but we have started working towards replacing tube feedings because she is doing so well feeding by mouth.  She loves standing up and seeing the world from a different view and banging toys together.  She is interacting with us more frequently and is still giving us smiles that will brighten anyone’s day!

September 2023 Update: Hayden has met a huge milestone – she has had her first meal exclusively orally!  She has worked so hard on feeding therapy that our dietitian and feeding therapist felt comfortable with Hayden eating her meals orally 3 times per day without any supplemental calories through her tube.  She still hasn’t been cleared to swallow thinner liquids, so the water she needs is still administered through her feeding tube.  She is also starting to make a lot more noises and is getting her little personality.  She is getting more mobile and has mastered getting from tummy time to the sitting position and is very close to crawling.  Her progress can be seen every day and we are celebrating every inch stone (not milestone) she achieves.

April 2024 Update: Eating food orally is now old news!  We are so proud of her that she has worked hard to be able to eat everything on her own.  She is starting to learn how to use utensils to build life skills that will serve her well for her lifetime.  We are also now working hard on liquids as she has been 100% cleared to drink liquids safely, but this will be a long road.  Hayden continues to progress from a physical standpoint.  She is standing and cruising on her own now and is working hard with her gait trainer to take some laps around our house.  She loves attention and positive reinforcement and gives us so many smiles and laughs these days.  We are so blessed by Hayden and she continues to stay healthy and happy, which we are so grateful for!

July 2024 Update: Hayden is a pro now at using utensils.  She loves feeding herself and is doing a great job with a spoon and fork.  It is a pleasure to watch her eat yogurt with a spoon!  She is also getting a lot more mobile now.  She is more motivated to stand up and walk now and is crawling up and down stairs with ease.  To say this girl loves water is an understatement!  She loves being in the pool and splashing around.  She also loves playing at the beach and letting the surf crash in on her.  Hayden has started on a new drug therapy – intranasal oxytocin.  There are promising results for improved cognition, core muscle strength, swallowing and other areas that could potentially benefit Hayden now and in the future.  Read the blog post on oxytocin to get a sense on how hard it is to start on a new therapy for a rare disease where there is very little known about it…

Hayden is a shining light in our lives and we want her to be a light for the world. We are optimistic and prayerful about her future and development and can’t wait to see what she will achieve!  We appreciate all the love and support we receive on this journey.