top of page
Search

Lenny


Boone

Meet Lenny

 

Lenny has ‘16p11.2’, a rare genetic disorder that is not widely known in the medical or broader community. 

 

Due to his condition Lenny faces higher risks for obesity, social and cognitive disabilities, encephalitis, psychological (violence & anger) issues and severe learning impairments – and currently is at a 5yr old level. It is unknown when he will hit his peak intellectual development – he may be there now. He also has Chiari malformation where part of his brain matter is falling into his spinal column. He does get severe headaches and his hearing is impaired. His speech development is delayed but he is working with a speech therapist. 

 

Learning online during COVID was an adjustment – but the silver lining was the cocoon of safety he experienced away from bullies and overall overwhelming academic pressures.

 

Currently with the support of his Grandma and his resource teacher, Lenny seems to be adjusting to school. 

 

Lenny loves to grow things, his pets, and building Lego (his most recent project was built out of 100 pieces on the 100th day of school this year).His family initially learned of us through a Facebook support group for his rare condition, where a new friendship was formed- with another Wish Kid! What a small world. 

 

Lenny has yet to choose a wish, but when asked he says he’d like to go to a beach.

 

Lenny and Family are grateful for the support of the Wish Fund and await the day he chooses his wish!

 

UPDATE:

February 2024

 

When Lenny was granted a wish from Guelph Wish Fund we really didn’t grasp what it meant.  We spoke with Lenny about it, sat on it for about a year, purchased a couple of major Lego sets for him to build because it was what made him happy.  It’s something he’s found that he can do and do very well. 

 




It was suggested that perhaps we take Lenny to Disney.  OK Disney sounds good.  Kids love Disney.  What we didn’t quite realize was the magnitude of what this particular, once in a lifetime trip had in store for us.  To say it was touched with magic would be an understatement.  Lenny (on his very first time in a plane) was invited to sit in the pilot seat, wear his cap and was given “wings”.  We hadn’t even arrived and this trip was already golden.

 

At Universal in Ollivanders (Diagon Alley in Harry Potter) in a room of people Lenny was chosen to participate in a wand choosing ceremony. Ask Lenny and he will tell you…the wand chooses the wizard. The wand provided so much magical fun while visiting the Harry Potter themed areas.  Since summer we have been reading the Harry Potter books and watched all the movies so this was something pretty special and Lenny knew that.

 

Also at Universal were Scooby Doo and Shaggy (which is one of Lenny’s favorite movies), both characters were so kind as Lenny tickled them and laughed and laughed.  It was beautiful to see him so free. His happiness meter was skyrocketing!!

 

At Disney we needed to find a washroom and when I approached a cast member they noticed Lenny had a Stitch hat and pin and asked if he wanted to meet Stitch.  She promptly brought him to the front of the line, whispered something to Stitch who came running over to hug Lenny. He signed his hat, a hat that is now Lenny’s pride and joy.  There aren’t words that can describe this moment.  I was in tears witnessing the raw joy Lenny was feeling in that moment. Joy, pure genuine, joy.  If “pixie dust” is real, Lenny got a huge dusting because everywhere we went things magically fell into place, it couldn’t have been more perfect!!

 

At Gatorland Lenny sat with an alligator in his hands and a snake around his neck which I swiftly had made into a t-shirt.  Such pride on his face as we live in a forest and Lenny loves catching snakes and crayfish etc.

 

The best of all was our first full day. Legoland. Lenny got to hang out in the inner sanctum where the Legoland genius’ worked.  He spent time with a Lego Master Builder (something we only learned about a few days prior) and even got to build with him.  This was an experience Lenny will never forget. 

 

Give Kids The World was exceptional.  We decided that this would be a “Yes” trip and Give Kids The World is all about “Yes”.  Yes to gifts, yes to special foods, yes to parties and yes to wearing his Stitch shirt and hat to bed.  Everyone there, every single day, made Lenny feel special.  It was unbelievable and we spent a couple of afternoons there to give Lenny some “down time”, best thing ever!!


So again, to say this trip was touched with magic would be an understatement.  It was as though we, our little family, were in a protected bubble that was filled with magical, unbelievable moments, one after another, removed, if ever so briefly, from reality and placed into a week filled with happiness. Not a drop of rain, Lenny, front and center at all things that mattered to him, laughter, huge smiles and love for Lenny from everyone he came across.  It was perfect.  How many people get to do that? Guelph Wish Fund did this for Lenny, did this for us.  We will treasure this forever.

 

Being Lenny’s grandparents and having already raised 5 children to adulthood between us we know the importance of giving children love, security and how to help guide their choices and paths into becoming productive, contributing members of society. 

 

When we learned Lenny had a very rare syndrome called 16p11.2 deletion and that very little is known about it along with macrocephaly (enlarged head) as well as Chiari Malformation (part of his brain tissue is protruding into his spinal column) we all knew it would take a lot to see him through life.  In December of 2023 we legally adopted Lenny as we couldn’t participate in research groups to learn more about his syndrome without having legal authority. Lenny had already been with us full time for years. We felt we could only do right by him if we were actively involved in educational research.  We have since already participated in a study with Sick Kids Hospital and are on track to being active members in learning more and educating others about this syndrome.  Lenny has his own fb page in the hopes of finding others.  It’s called 16p11.2 deletion – Life with Lenny, for those who wish to follow.

 

Lenny is an exceptional human.  He is kind, loving, empathetic, sweet and has an incredible mind in certain areas.  It’s these areas we will foster, nurture and encourage to help Lenny potentially build a future life, whatever that may look like we will be right there for him. 

 

 


Click here to help other wish kids fulfill their dreams!

Recent Posts

See All

Mark

Comments


bottom of page