Jessica and Jonathan: Growth Hormone Deficiency

Mar 2, 2020 | Autism Spectrum Disorder, Developmental Delay, Growth Hormone Deficiency, Stories | 0 comments

Jessica and Johnathan were shocked and relieved to receive a diagnosis for their son Trenton. Jessica struggled for years to find a doctor who would help her.  Her journey in advocacy led her to start a nonprofit organization called Collaborative Corner for Exceptional Children. A company dedicated to helping parents find resources and become advocates for their children with disabilities.

Collaborative Corner for Exceptional Children  

Hormone Growth Deficiency 

Both Jessica and Johnathan’s children have hormone growth deficiency or (GHD).  GHD affects the pituitary gland, the gland that is responsible for the production of various growth hormones.  “Trent’s pituitary gland works at a rate of 30% and Jake’s works at 70%” said Jessica.  

Trent has several other diagnoses.  Jessica shared, “Trent is more severe.  He’s got a Rathke’s cleft cyst that sits at the base of his pituitary gland..he is on the autism spectrum, he also has combined type ADHD, vision impairment, he had sensory processing disorder and some developmental delays

Most Doctors Dismissed Their Concerns

After struggling to find a doctor who would take their concerns seriously, Jessica finally found a doctor who listened.  Jonathan recalled, “..we went through a number of doctors early on in Trent’s life. Most of which dismissed it as normal or you’re first time parents, was Jessica who really had this feeling or inkling that is not normal or that there was something else.”

Jessica’s determination paid off.  She was able to find a doctor who really listened to her and wanted to help them figure out what was going on.  Jessica said, “She was the first person to sit and actually listen instead of coming in with a preconceived diagnosis what this is just by looking at what I filled out.  She brought nothing in with her but a piece of paper and pen, took notes and listened to my concerns.”

Advocacy Helped get Through the Grief

“I pushed the grief along for so long because I was determined to figure out a way to help him..once I was able to accept the diagnosis and focus on his abilities instead of his disabilities I was able to move on from the grief.”

“So, once I decided I was part of the team instead of just somebody coming in and listening to the doctors, I started challenging and asking more questions and decided this is what is best.  We were working together, I was able to advocate for him more. I was able to say, ‘Hey this is not working for us as a family, I don’t think this is going to work for him.’ So, I really became his voice in that way.”

It was through her advocacy and experiences with Trent that led Jessica into forming her nonprofit company, Collaborative Corner for Exceptional Children. 

Starting Collaborative Corner for Exceptional Children

Jessica wanted to start Collaborative Corner to help other parents who found themselves in a similar situation as her.  She said, “I initially just wanted one centralized hub that people could get simple answers to questions they that way they didn’t have to go to five locations just to find out what they needed to do next or to find answers to their questions.”

Jessica said, I met with them (Trent and Jake’s speech therapists) one time and over one lunch we decided that we were going to start a new organization that was for all families and children with exceptional needs and we were going to help them in any way that we could and offer as many specialist and services as we possibly could.”

Services Collaborative Corner Offers

Kristen who is a co-founder of Collaborative Corner said, “..we have a multitude of services that we offer.  We offer a ground of expert panelists in each of their fields. We offer a panel of speech therapists, feeding therapists, physical therapist, occupational therapists, ASL teachers, behavioral therapists, and IEP advocates.” 

She added, “With these panelists, families can email these panelists directly their questions at no cost; any questions pertaining to their, they have access to us and we will respond to them within 24 hours about their questions.”

Working Moms Making Collaborative Corner a Reality

Jessica, Kristen and Blaire all have jobs working elsewhere.  They are all dedicated to achieving their goal to make Collaborative Corner for Exceptional Children real. They all shared how they balance work, family, and Collaborative Corner.

Blaire, who is the company’s executive director, said, “I work part husband is a firefighter, so we have a really crazy schedule..working on Collaborative Corner, not in the morning.  I’ll do mine on a lunch break or definitely in the afternoon while he (her son) is in tutoring.”

Kristen, who is the director of development, shared how she balances her work schedule; saying, “I’m typically up at five so I can work on Collaborative Corner for at least an hour, answering emails, writing some blog posts. Whatever needs to get done..I’m making phone calls in the car on my lunch can find me at my daughter’s dance studio on my has been a real learning curve, finding that balance,’s a big juggle but we are figuring it out.”

Jessica also works part time and said, “I also have a part time that does take up a bit of time..but my days are filled with growing Collaborative Corner..because we offer these services after hours, we operate when people get home from work. So I’m often doing phone consultations at 9 PM..we work well into the night, all of us do, every night.”


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