Heart of a Volunteer
“The heart of a volunteer is never measured in size, but by the depth of the commitment to make a difference in the lives of others.” – DeAnn Hollis
My goal in volunteering for Hope for HH is very personal. My son Christopher was officially diagnosed with HH (hypothalamic hamartoma) at age 4, at the insistence of me and with his presentation of bizarre seizure symptoms. As a Mom of five, and an experienced ER Nurse I knew his first diagnosed seizure may have been part of a bigger diagnosis than the epilepsy his neurologist diagnosed based on the other overlooked symptoms.
Christopher is a twin and my youngest child. He was born a healthy, but unlike his sister and brothers he was colicky and seemed to be more fussy than my others, even his twin. He was diagnosed with colic/acid reflux at 5 months, but other than than he seemed like a normal baby. He met all his milestones, but was not a great night sleeper, and preferred to sleep with us. We also noticed about 15 months he appeared panicked at bedtime and would sit up randomly and say things then lay back down…these symptoms later became more bizarre as he began to turn with episodes of him giggling and saying random things of why he was laughing. Even though it was apparent they were things he was making up. So when he had his first seizure at age 4, it became clear to me something was not right.
He was hospitalized for 10 days after his initial seizure. His EEG was showing wild crazy brain activity, much worse at night yet he was not having any signs of seizures which puzzled the doctor. I began to do mad research and after 10 days in the hospital, and a normal MRI we went home. While we were in the hospital I had came across a ton of information but HH did not initially hit my radar.
He had a another major seizure at pre-school about 2 months later and it almost ended badly, his heart slowed down and he had stopped breathing, we arrived to find him at the hospital on a ventilator, and later diagnosed with an episode of status epilepticus, and aspiration pneumonia form vomiting during this episode. It was then I decided I had to figure this out…
After researching, I hit upon seizure types and landed on a link sponsored by Hope For HH. When I read it I almost dropped my phone. It was a clear description of my son!!! He had all the symptoms, and the final piece said often missed on MRI I spoke to his neurologist and insisted they redo his scan with HH MRI protocol. It was the phone call 3 days after the scan that was life changing..He had a small HH, and yes they missed it on the initial scan!
Since I knew in my heart already he was going to be diagnosed, I was already prepared. I knew where we were going to go and who to reach out too..and that person was Erica Webster. She had just recently lost her daughter after a vigilant fight with HH, and yet when I reached out to her she spent almost 2 hours in the phone with me. It was an emotional call, but I knew hearing Grace‘s story and reading about it, combined with all the timing, and information that she shared I knew Grace was Christopher‘s guardian angel.
Erica told me about a new procedure in Texas for HH, called laser ablation. We initially met with Dr. Rekate, who is amazing!! We discussed this new treatment option. He told us he was willing to help Christopher, but agreed a consult in Houston was worth a trip as he heard these guys were doing great things too!
We consulted with Dr. Angus Wilfong, and he agreed that since his HH was smaller he would be a great candidate for this new procedure, they had done a few and it was showing promising results. We set a surgery date of August 4th, we flew home to prepare for what would hopefully be the answer we had prayed for.
In the two months before, Hope for HH helped me get in touch with other families whose children had the laser ablation and had good outcomes. These Moms were my rocks and heroes sharing their stories and helping me through a scary time. Choosing brain surgery was not easy as a parent, but as I thought of the day of him on the ventilator, I knew the seizures were going to get worse and medication was doing nothing we had to act fast as his EEGs and seizures were more frequent.
We flew to Texas and met Dr. Daniel Curry on Monday, Christopher‘s surgery was that upcoming Friday. He was open and honest about the procedure, what his goals were and that he would safely do his best to destroy the HH, but not take any risks and would stop if he felt that the surgery became unsafe. He explained all the risks, but in my heart I knew he was the miracle we had all hoped to find.
I remember that day forever and always will. It was very long, I can‘t imagine how it felt for the them! We received the news at about 4:40 pm they were done, and they felt confident that Dr. Curry was able to ablate the entire HH! What made this more special was the fact we had another family who had the surgery done the week before, with positive results too, there with us when Dr. Wilfong came to share the news. Having another HH Family there with us made it all the more special!!
Christopher spent two nights in the hospital, he woke up hungry (from the steroids) and when Dr. Curry came to see him we laughed as he was eating chips and spicy salsa, to which Dr. Curry laughed because he had been on a breathing tube for the anesthesia all day and his throat should have been sore, so to seeing him chowing down on this we all laughed. He even offered us to take him home later that night (he knew as a nurse I would be okay, but I told him I was Mom and scared so we stayed in the hospital and then were discharged back to the hotel.
His last seizure since was a dacrystic (crying one-right) before surgery, as he was scared, and none since. His first EEG after his surgery was completely normal and has continued to be since, and he weaned off seizure meds after his 6 month checkup, when we knew his brain was healed completely.
This whole experience has been life changing. My decision to pay forward comes from what I have received from Hope for HH. I too want to stay involved and help other families by sharing my sons story so I too can be there for them during this journey.
I will always be grateful to this organization, especially Erica for sharing the information about laser ablation and where to go. Dr. Rekate for his consult and support, Dr. Curry and Dr. Wilfong for their dedication to helping our HH Families, and for the miracle we have received, Truzella at Texas Children‘s Hospital who helped us get there, and Patsy (Dr. Curry‘s Nurse) for all the support and work for HH patients.
Christopher is now 10, an is in 4th grade and is doing amazing. His teachers tell me he is super sweet, and just scored amazing in recent standard state testing! He also enjoys sports. He plays travel basketball, football and baseball. All the things he is able to do because we were able to have help and support to get him here. So my reasons to volunteer are personal, as well as I want to give back for what Hope for HH has given me. I look forward to this opportunity and hope my sons story gives Hope for HH!!!
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