LiamLicks: Dylan's Dream

Sunday, May 19, 2024

Dylan's Dream

this blog story is about

Dylan Nikol

my grandnephew age 2

who has a rare chromosome disorder

shown here with his dog, Doug the Pug

and here he tells you about it

Hi everyone, I wanted to introduce myself

My name is Dylan Nikol and I am 2.5 years old.

I have a rare chromosome disorder called chromosome 6p duplication (or partial trisomy 6). Essentially instead of having 2 copies of chromosome 6, I have about 2.5 copies.

There’s only about 50 reported cases of this, and probably only a handful of my exact duplication. Since it’s so rare, there’s very little out there in the literature, and a lot is unknown.

This nonprofit was started on my behalf, to help raise awareness of and support research for Rare Chromosome and Gene Disorders, including 6p duplications.

Thank you so much for your support!

https://www.dylans6pdreamteam.com/

The colors for Rare Chromosome Disorders are yellow and blue

and Awareness Day is June 13

Dylan's first fundraiser is June 22, 2024

I was asked by my niece, Tara Nikol, Dylan's mom, if I would be interested in seeking fundraiser donations from places like my fave restaurant Crabtree's

okay

I can do that

Tara and Jason sent flyers

I used the first batch

I asked for more

used the second group

then I started printing my own

I wrote a blurb

I have been tasked with the honor of requesting donations in the form of gift cards or gift baskets or merchandise for a fundraiser raffle to be held on June 22, for my grandnephew, Dylan Nikol, age 2, who suffers from a rare chromosome disorder. I have flyers with the donation information, Dylan’s story and the mission of our team and an accompanying introductory letter verifying I am a designated volunteer for the organization. Thank you in advance for any help you are able to give.

I learned on the job

who to approach

ways to connect

in person

text

Insta

website inquiry

what pitch works

grudges

I have them after this...but have decided not to list the places

the generosity and parsimony I encountered were eye opening

and ended up with 33 offerings from people, business and corporations and other fundraisers

met some incredible people

caused two people to cry

and others to hide

people sent me to other people

and to known fundraiser friendly websites

I found out

There are companies and organizations dedicated to helping with fundraisers and involvement in community causes: Trader Joe's, Costco. NY Jets, NY Giants, Long Island Ducks, Hicks, dohertyinc.com, Starbucks, and more

It was an astonishing opportunity for me and I thank Tara and Jason Nikol and Jenny Nikol for inviting me in

and for my family and friends who participated with donations, merch and suggestions

If you are reading and hearing about Dylan for the first time please consider joining in with a contribution, donation, gift card, merchandise, time, tickets, gift basket

the flyer above gives all sorts of ways to help

and if you are one of the places who promised and have yet to deliver

not too late

donate

and to those I left self addressed stamped envelopes

use them and stick in a gift card

you owe me a stamp if you don't

https://www.dylans6pdreamteam.com/

https://www.zeffy.com/en-US/fundraising/4b1a24fd-36ec-4703-b131-9c4bb87b335f

Liam helped by providing support from home