by hightechgrammy 14d ago

For those Cuties who knew our Ben....

I still keep in contact on Facebook with the families of children with the condition Ben had = Koolen DeVries syndrome. This is a relatively newly discovered. syndrome, and there is not much information on what can be for these kids when they get old. Ben was 26 when he suddenly passed away from a choking accident. Cuties helped me so much during that time, and even since, still mentioning him and being patient with me retelling his story and reminding me how they loved him too.
This week there have been about 8 posts from families of the older "Kool Kids." This is a relatively newly discovered syndrome, and there is not much information on what can be for these kids when they get old. These older kids are having terrible anxiety with hallucinations and horrible days and nights. These kids are forgetting their families, run away from them, screaming. They are losing the developmental skills that took so long to finally achieve after years of therapy. These parents are struggling so hard! It is sounding like may be 10% of the older kids are having these major challenges. Ben had terrible anxiety, but nothing like these kids! My heart just breaks for them. Please, will my dear Cutie friends pray for these families as well? Thank you so very much, Jan

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by dailylaundry 13d ago

I agree with Karen - whenever I see this picture of Ben, it puts a smile on my face! Such a terrible disease, the fact that there is such little information about the disease makes it doubly hard for the families. Hugs and prayers, Laura

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hightechgrammy by hightechgrammy 12d ago

Thank you so much. I'm so glad people remember our Ben. It is like these young adult "Kool Kids" are blazing the trail for those to come. These parents are reluctant to post about their challenges so not to scare the parents of the little ones. I love this picture too!

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by crafter2243 Moderator 13d ago

Ahhhhhh. How nice to see Ben's picture again. Brings back memories good and sad ones.
I will try to remember adding these families into my prayer. I can not imagine what it must be like. It has to be so difficult wondering what will happen to them once the parents are no longer around to take care of them. "Kool Kids" is the perfect name for these champions.

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hightechgrammy by hightechgrammy 12d ago

Thanks about the Kool Kids for Koolen DeVries syndrome. Both doctors that it was a good idea. It is such a good way to refer to our kids. The Opitz Family Network call their the Kidz.

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by asterixsew Moderator 13d ago

Jan sorry I havnt commented earlier. i saw Bens picture when I looked in on Cute on my phone this morning. Its easier to write on a laptop. I knew on seeing Bens lovely photo that this was a special post. Many children and young people with special needs have been hugely affected by the pandemic with their routines altered. I bumped into a young man I taught the other day and he hates all thats going on as he now has no daily activities with others. So sad when its not understood that we have to keep apart. How distressing for the parents of Koolen DeVries syndrome children that some are having such problems. Thinking positive thoughts for all and thanks so much for this post

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hightechgrammy by hightechgrammy 12d ago

You are so right, this isolation has been really tough on the kids - all of them. For the kids with special needs it really affects their need for social development. And, since they are more immune-compromised, parents are especially careful. Many need to see specialist in person, but for now most are not doing in office visits. These kids need to be seen in person. One 22 year old girl just passed away with COVID! Thank you for caring!

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by gerryvb 14d ago

prayers for all those families. and yes I remember Ben's pictures and stories too.

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hightechgrammy by hightechgrammy 12d ago

Thanks, It makes me feel so good that people remember him. I've been trying to take his room apart and turn it into a regular guest room. It has taken this long, but now, I'm barely able to do it. I figure I don't have to give away anything I'm not ready to. It's so nice people remember Ben.

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by toogie 14d ago

Such a loving photo of Ben. I remembered it and him with his bananas! All special needs children need our prayers and so do their parents and caregivers. It’s a physical, mental struggle for both the special needs person and the parents. I know you will always miss Ben but each time I see his photo it brings me a smile.

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hightechgrammy by hightechgrammy 13d ago

I can look at his pictures now and smile instead of cry. I love the banana one too - especially since Mac the parrot is leaning as far away as possible! Crazy relationship! Still have Mac at 25 years old!

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by sewtired 14d ago

I missed out on this story. So sorry for your loss. Time helps to heal these wounds of loss, but can never completely erase them. I pray the good memories comfort you. Prayers for all folks who are struggling with difficulties of any type, especially these Kool Kids and their families. Thanks for educating us.

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hightechgrammy by hightechgrammy 13d ago

Thank you for your understanding and for the prayers. The isolation of this Pandemic is making life a lot harder on these special families too. Hugs, Jan

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by sdrise 14d ago

Ben will always be special to us all. Prayers to all the families struggling with this terrible disease..

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graceandham by graceandham 14d ago

I so agree, he was special to us. I will pray with the others here for these struggling families. Anyone who had a mental struggle before Covid, it has been multiplied. Anyone who was grieving a loss, it has been multiplied. We are not meant to be isolated from each other, but to live in community and care for each other.

hightechgrammy by hightechgrammy 13d ago

And, Cuties has been such a help in the isolation. We are used to communicating with our true friends here. We have shared so much over the years, and although I have never hugged you in person, I feel the heartfelt cyber hugs!

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by sebsews 14d ago

I came to Cuties thinking just another embroidery site. Well soon did I learn Cute is much more. You are one I followed, looking at post of handsome Ben and his life has been heart warming for me. Prayers for the "Kool Kids" and their families. Thank you for enlightening us.

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hightechgrammy by hightechgrammy 13d ago

Thank YOU for your caring. I took me about a year being on here before I shared about Ben. I wanted a place that was void of my challenges. It was so much better to share, and I had no idea of the caring and sharing of other people's struggles. It seems there is always someone fighting tough battles. We hid it so well. We all need to share and feel the love from Cuties. Thanks for caring about Ben too!

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by 02kar Moderator 14d ago

Jan, seeing a picture of Ben always brings a smile to my face. He continues to be a special Cutie in my book. I had no idea of these terrible symptoms and the lose of such hard won skills as the folks with this condition experience. My heart breaks learning this. Thank you for teaching us a lesson we need to learn. We need to pray for parents and siblings and other relatives who have loved ones with special needs. The care is 24/7. Please know you are still wrapped in many a cyber hug and Ben's memory lives on.

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hightechgrammy by hightechgrammy 13d ago

Thank you so much, Karen. It means so much to me that Cuties still remember him. It's been 6.5 years! As the time goes by I realize how much he truly affected people. He was a super challenge but even more than that it was a blessing to be trusted by our Lord to be his parents. Hugs to you too!

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by marianb 14d ago

The children and their families are in my thoughts and heart. Hoping a solution to this troubling syndrome will be forth coming.

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hightechgrammy by hightechgrammy 13d ago

There is research going on, but I don't think it is on the anxiety issue. It seems to just have developed and families are sharing. One said she was afraid to share about her daughter's decline as it would discourage new families. Yet by sharing a whole lot more came out and now they are encouraging others. I know it can be frightening for the new parents with new diagnoses, but there has to be a balance between what they need and what the parents with super challenges need too. There are some new parents who are stressing a lot over their child just being sedated for an MRI. I was there too at first. I understand the fear, but after tons of times having to sedate our kids, her stressing just seems unnecessary. But, I've learned that just because what seems to me a simple bump in the road for me, doesn't make that any less of a challenge for them. Don't we learn a lot as we age! Thank you so very much for your caring!

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by rescuer Moderator 14d ago

So much love and so much heartache for all. Of course I'll pray for them.

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hightechgrammy by hightechgrammy 13d ago

I know you will! Don't you have someone with special needs in your family? Some people are naturally understanding of these kinds of challenges, and then there are some that just never "get it."

rescuer by rescuer 13d ago

My youngest son is autistic. The changes in our world have increased his anxiety. He learns so much listening to stories of Ben and other children that have special needs like Toogie's granddaughter. Thank you for sharing Ben with us!

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