Tuesday, January 22, 2008

A request for some help from the community

Enchanted Rose's sister, Julie, has a son who suffers from a seriously rare genetic disorder.  His name is Collin. 

Among is extensive list of symptoms are:  dwarfism, extreme sensitivity to light, double cataracts (since been removed), severe autism, and many, many others.

His condition is so rare that he's only 1 of probably a 100 documented cases in the entire world.

Here is a quote from Collin's CaringBridge Site:

What is Trichothiodystrophy you ask. Trichothiodystrophy (TTD) is a rare genetic disorder that involves the production of abnormal brittle hair, Icthyosis, physical and developmental disorders. It can also involve ataxia, stunted growth, skin sensitivity to light, and to UV rays.

TTD is a seriously disabling disorder with a severe skin affliction and serious developmental defects and growth retardation. It can also cause immune deficit cells, premature aging in facial features, cataracts and dental abnormalities, poor weight gain, Autistic characteristic such as irritation to high frequency sounds, and repetitive movements and behaviors.

In other words I have to be VERY careful when I go out in the sun because the sun can hurt me. I have to work extra hard to do things that other people can do with ease. I have to wear glasses so that I can see and wear hearing aids so that I can hear you. I am very small but my mom says that I am like Peter Pan and that I will always be her boy. They say that I might not live as long as other people but I don't believe that. I believe that they will find something to help me grow old with my little sister and best friend Regan. I am often times in pain but my mom says that I am a tough little boy! I have to be careful when I get sick because I can end up in the hospital for a long time. My Immune system is not as good as other kids. Despite all of this I am a very happy boy that loves to play and make friends where ever I go

You can read up on Collin at his CaringBridge site.  The pages that Julie has created to explain Collin and his condition do it much better justice than I ever can.   While you are there, feel free to leave some hugs or sign the guest book.

You can also keep up with Julie and her lovely family on her own blog.

In all this time, Julie has never complained about the seemingly insurmountable role she's been placed in as the caregiver for such a special child.  I am just constantly amazed at her resolve.  It was for that reason, we brought her and her daughter out to our house in January as a late Christmas Present.  She needed some Julie-time.

During his 7.5 years on this planet, Collin has benefited from the generosity of many charitable organizations. 

To try and help repay them for their generosity, Julie has used her participation in the LA Marathon's 5K Fun Run/Walk as a way to try and raise money for a charity of her choice.

This year, she has chosen Ability First.  They are the organization that provides Collin's Day Camp during the summer.

I know you must be wondering why I am asking this on a Disney blog. 

Collin has got to be one of the biggest Disney fans that I have ever known.  He has had the opportunity to go to Walt Disney World through Make-A-Wish but one of his conditions is that he can only get 15 minutes of exposure to UV Radiation IN A WEEK.  As many of us know, that makes going to Walt Disney World a problem.

Plus, they live in Long Beach, California and their entire family has season passes to Disneyland (gifts from the family).

Collin's favorite attractions at Disneyland are:  It's A Small World, Finding Nemo Submarine Voyage, Disney's Electric Parade, Dumbo, and many others.  He is quite the charmer out the Cast Members on the left coast and his wheel chair sports buttons and pins given to him by Cast Members, guests, family and friends.

Julie's goal is $2000 this year.  For the first time that I've known her, I'm actually in a position to help more than just writing a check.  Since I have quite a readership here, and I know the generosity of the Disney Community, I thought there was no harm in asking.

I'm going to close this post with the e-mail I was sent by Julie:

It is that time of year again!!

We are so honored to be working with and fundraising for such a wonderful organization like Ability First. Collin goes to day camp at Ability First and LOVES all of the staff and wonderful people that work with him. It is a "safe" place for him to go and enjoy being a kid! They have an indoor pool, outdoor covered patios, computers, and other amazing actives that allow him to be included in everything!!  

We are so grateful for the love and support that we have received from each one of you over the years. Thank you for supporting us in this change of charities in our fundraising efforts. This will be our fourth year doing this as a family and we LOVE it! If you would like to join us please come on!!! This year we have made it easier for you. You can donate to Collin's fundraising efforts by simply going to this web site.
http://www.abilityfirst.org/la_marathon/view_runner.asp?runner_id=413

We would be grateful if you would like to pass this link on to others that you may feel would be interested in supporting our family in our effort.

So, if you'd like to help out, follow the link provided by Julie above.  You can also link to this blog post, or write posts yourself and help spread the message.

I would be ecstatic if we can shatter her $2,000 goal and show her what the Disney Community is really all about.

It's often the organizations that provide the most help to others that needs the most help from us.

2 comments:

Tim said...

count us in!

julesttdmom said...

Thank you so much for the support. We are already feeling the love from Tim! Go Disney Geeks!!! We love y'all!!!!! You are right... Collin is the biggest Disney fan I know!wink!
BIG HUGS,
Julie