Shannon Gray answers some frequently asked questions. Shannon and her family live in Bristol, Rhode Island. Her 4 year old daughter Emma is a super hero, firefighter, princess and WSS Warrior!
How did all start?
Our daughter was born extremely ill and required 116 day of hospitalization before coming home. The hospitals were very interested in what caused this difficulty.
Do you already have a diagnosis? How long did it take you to get it?
When our daughter was close to a year old Boston Children’s Hospital asked if they could enter her in a research study to find out why she had been born so ill. We were then contacted by the genetics department suggesting whole exome sequencing. At 20 months old she was diagnosed.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Our daughter has received speech, occupational, and physical therapies since the age of 3 months. Initially services were through an early intervention program aimed at teaching her how to feed and once she graduated from the feeding tube (2 years of age) she received services for language and motor skills. She transitioned to school based services in these areas at the age of 3. She has also graduated from pulmonology at this time following a diagnosis of Pulmonary Interstitial Lung Disease which was resolved with steroids. She is still seen by cardiology, genetics, neurology, otolaryngology, and ophthalmology. She has been assessed by urology, an allergist, and immunology. She was treated by dermatology for some time as an infant due to a persistent newborn rash. She receives special education services in a collaborative setting with a regular and special educator.
What has been the most useful thing for you so far?
We found an online parent support group on Facebook that has provided a wealth of information and a village of support.
What have been your biggest difficulties?
Our biggest difficulty has been trying to determine what is related to the WSS and what is typical child “stuff” and what is potentially related to her other diagnosis. The other big difficulty has been in the rarity and having to educate the “professionals”.
How has your social and family environment reacted? Have your social or family relationships changed?
As with most special needs parents I would say you find out who your friends and true family are when you face something like this. Most people have remained a part of our lives, but unfortunately some were unable to handle the changes. I met some of the most amazing people through the experience, who I would never have had the opportunity to meet if this had not happened in our lives.
What things have you stopped doing?
For quite some time I did not take her to do typical things because I knew she was delayed and I felt judged. Ultimately I learned to stop worrying about what others would think and stop worrying about what was next. I learned how to live for the moments and enjoy life.
What do you think about the future?
Her future is unknown, not only because of WSS but also because it is not my future to write. She is capable to so much and I never want to limit her. We met with a doctor when she was about 3 and were told she has the ability to live independently, go to college, and have a family of her own…if SHE wants to do all of that then I fully support her. WSS is such a spectrum that I have no idea what the future looks like, even seeing adults with it, but I look forward to going on this journey with her.
If you had to describe your life in a sentence, what would it be?
Every day is a journey WORTH taking.
Finally, what advice would you give to a person in a similar situation?
Read what you can read and talk to who you can talk to, but ALWAYS remember this syndrome is a spectrum and the future is yet to be determined.