South Bay mom uses son's disorder as a platform to help parents in similar situations

GILROY, Calif. (KGO) -- Kara Solomon and her husband Jeff had one son, Parker, when they learned they were pregnant with another boy.

What they did not know was how his birth would change their lives forever.

Bennett Solomon was diagnosed as an infant with a neuro-developmental disorder called CDKL5, a disorder that affects 1-in-40,000-60,000 people.

Kara knows of only four other families living with the disorder in the Bay Area.

The symptoms include the inability to walk or talk, the need to use a feeding tube for eating and uncontrollable seizures.

Bennett has somewhere around four to five tonic seizures per day that last two to five minutes as well as several spasms.

"He wasn't going to live the life that I had dreamt for him," Kara said. "I wasn't going to have the life that I anticipated that I was going to have. So I joined a support group for CDKL5 parents. These parents were so inspiring and helpful to me that it kind of gave me some of the strength and the knowledge and passion to want and do the same, but on a smaller scale. So I started writing."

Kara took this seemingly difficult situation and looked for a way to help others and Build a Better Bay Area.

She did this by writing a blog - Bennett's Wish.

The blog is designed to share the story of Bennett in a way to help other parents who have children fighting disorders or diseases, not just CDKL5.

"I've received several people that have reached out to me after reading my blogs and telling me, 'you've really resonated with me. You've helped me not feel alone. Bennett gives me hope for my children'," Kara said.

Since then, Kara said the blog has helped so many others in similar situations and it has gained national attention.

In May, the blog was picked up and shared by "The Mighty" an online community of people battling health issues.

Unfortunately, not everyone has the same sort of publicity with their disorders.

This is where Bennett's Wish blog comes in.

"There's a big segment of our population that's dealing with some sort of disorders, disabilities or some sort of rare disease and those things are hidden," Bennett's father, Jeff Solomon, said. "I think that the thing that we're really looking for is exposure for people with disabilities. We want people to see that we are here, we exist and help bring some humanity to segments of the population that are being ignored."

While the blog helps so many others, it was created as a way to help Kara cope with the struggles that her son faced.

But now, it is an inspiration to others and something that has brought support for Bennett and joy to her own family.

"A lot of the support that we have gotten for Bennett has been through the support group, the blog and other parents that I've met that are in a similar situation," Kara said. "It has just made our quality of life so much better."

Kara and Jeff Solomon were dealt a hand that very few people have been dealt with in the world.

It's something that they will have to live with forever while Bennett grows.

While others may have crumbled in a similar situation, they instead learned to count their blessings and make a difference.

"I think it's important to Build a Better Bay Area through the awareness of CDKL5 disorder and other rare disorders like it because it builds a community where people are empathetic. Scientists are hoping that if they can treat CDKL5, then they can treat a whole array of other rare disorders. We celebrate just being together as a family every day and the fact that Bennett is healthy and here with us."

You can learn more about "Bennett's Wish" by visiting his Facebook page and reading Kara's blog here.

To learn more about the International Foundation for CDKL5 Research, visit their website by clicking here.

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