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Allyson Glenn Kelso's Website

Welcome! Allyson's web site has been provided to keep family & friends updated on Ally & the journey she faces as she lives with EEC Syndrome.

"For I know the plans I have for you...plans to prosper you and not to harm you, plans to give you hope and a future..." Jer. 29:11


Allyson Glenn Kelso

Born: December 22, 2004, 2:11 AM

Weight: 6 lbs 15 oz Length: 20 1/2 inches

Allyson Glenn Kelso entered the world at St. John's Regional Medical Center in Oxnard, CA on Wednesday, December 22, 2004.

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Ally entered this world with some special and unique features. She has a bilateral cleft lip and palate, along with some missing fingers and toes. Her skin is fair and thin, making all these features characteristic EEC Syndrome (Ectrodactyly Ectodermal Dysplasia Clefting Syndrome). Ally should be able to lead a normal, active life after many surgeries down the road. She is a bundle of joy with beautiful dark blue eyes and fuzzy blonde hair. We appreciate your thoughts, prayers, support and love as Ally faces her long journey. We are also grateful for the love, support and encouragement extended to Kristin, Mark and big sister Morgan as they embark on this path together. Thank you!

Journal

Wednesday, February 17, 2010 7:55 AM CST

Well, yes... it's been awhile... In honor of Ectodermal Dysplasia Awareness Month, I was *encouraged* to update Ally's website once again for those faithful followers who still check in on us from time to time.

If you'd like to help our family raise $6000 for the NFED this month, please consider purchasing raffle tickets by contacting Terri, Kristin, Ashli, or Lydia. We appreciate your support and encouragement over the years and are thankful for being a part of Allyson's journey!

Dear Friends-

It’s raffle time again! February is Ectodermal Dysplasia Awareness Month... As many of you know, my daughter, Allyson, has faced many challenges over the past five years as she's lived with Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome (EEC Syndrome). While most of her medical challenges are behind us, we continue to see specialists for her dental health and vision loss issues associated with Ectodermal Dysplasia. Ally has been under anesthesia twice (with a third procedure to be scheduled soon) to treat multiple cavities in her teeth which are malformed and have poor or absent enamel. This has involved root canals, fillings and crowns, and nerve treatment. She's also followed routinely for her vision loss due to corneal scarring and has eye exams under anesthesia every 3-4 months. She has recently developed glaucoma in her right eye which will require surgery in the coming months. Despite all of this... she presses on and is seemingly unphased by her challenges!

Ally has blossomed into a spirited five-year-old who is inquisitive, smart, and kind to others. She has a vivid imagination and loves playing with dolls. Ally continues to thrive at school and likes to "help" her classmates whenever possible. She is very verbal and has a better memory than most computers! Under the instruction of her Teacher for the Visually Impaired, she is now typing and reading Braille letters and some words. She's beginning to memorize simple addition facts and can sounds out letters to spell out loud. She loves to sing and has become a “show-stopper” at church singing with other 4 and 5 year olds in the Cherub Choir.

Through all of life's ups and downs, Allyson's tremendous spirit shines through in everything she does and hopefully those who have met her have witnessed that as well. I rarely talk about her "condition" and challenges because I want people to "know Allyson as Allyson" and don't want her defined by this syndrome and the challenges she faces everyday. When people ask questions (which I whole-heartedly welcome!), I'm excited to explain the particulars of EEC Syndrome, yet I don't dwell on how this has affected our lives or Ally's well-being. "She is who she is..." and like any parent, I only want the best for her and her life. I am writing you today because I'm asking for your support in honor of Allyson during Ectodermal Dysplasia Awareness Month.

I have become involved with the National Foundation for Ectodermal Dysplasias (NFED) as a result of Ally's diagnosis. In support of the NFED, I am selling raffle tickets and raising awareness through sharing information about Allyson's condition which is just 1 of 150 Ectodermal Dysplasia (ED) syndromes. I'd also like for others to know how the NFED helps families through research, education, and alleviating the financial burden created by some medical treatments. While we have not personally had to call on the NFED for financial assistance, we've continued to raise money for the foundation to fund research programs and help others seek treatments that may not be available otherwise. Because of supporters like YOU, our family has raised over $60,000 for the NFED between raffle ticket sales and the annual Rally for Ally fundraisers over the past 5 years. Please visit the NFED's website at http://www.nfed.org for more information about how YOUR generous gifts help affected families.

In the past year, we have seen ground breaking research in developing a protein therapy that would minimize some of the symptoms associated with Ectodermal Dysplasia. While this is not a "cure", this therapy could potentially help affected babies grow hair, develop "normal" teeth and nails, and improve the ability to sweat. Clinical trials are set to begin within the next year and implementation soon afterwards. This research and development has been made possible because of generous donations to the NFED.

So, how can you help Ally and others affected with Ectodermal Dysplasia ... AND win some CASH for yourself?!?!?

Raffle tickets sell for just $1 each and there are five in each book. The drawing will be held on Thursday, March 11th at 12 PM CST at the NFED office in Mascoutah, IL. Prize winners will be notified by telephone, with a confirmation letter to follow. Last year, the first AND second place winners had purchased tickets from our family. Wouldn't you like some extra cash in your pocket this spring?

Prizes are as follows:
1st place = $1000
2nd place = $300
3rd place = $200

In addition, the family who sells the most tickets receives a voucher for the Annual NFED Family Conference. By the way, thanks to you all, we've won this prize three years in a row! The conference is an amazing three-day event where hundreds of families who lives are touched by ED connect, learn, play, and are involved in research studies. This summer's conference will be held in Colorado Springs. We're looking forward to attending the conference for the fourth time. As Ally gets older, she's starting to recognize her own physical differences and it's essential for her social/emotional well-being to reunite with many friends facing the same challenges she does living with EEC Syndrome. She has occasionally mentioned over the past year that she wishes she had 10 fingers "like all the other kids". At the NFED conference, there are plenty of kids (and adults) around who don't have 10 fingers and it's reaffirming to her to know that she's not that “different” afterall…

I understand that times are tough and many of us continue to face economic challenges... If you are able to participate this year, please send your contribution to me in the form of cash or check (checks payable to: "NFED") – please include your phone number. You can mail the checks to me and I will mail the tickets back to you after filling out the stubs. Also, if you have self-adhesive address labels (one for each ticket purchased), please include those with your check. Name, address, and phone number are needed on the ticket stubs in order for the NFED to contact the raffle winners. If you don't have address labels - no worries - I can make them for you! Please e-mail me in advance if you'd like to purchase raffle tickets and need labels so I can plan to have enough on hand and start working on the labels ahead of time!

Because the ticket stubs need to be mailed back to the NFED headquarters in Illinois by March 9th, I need to have all checks and money accounted for by THURSDAY, March 4th.

In 2007, we sold 4550 raffle tickets and received honors for being the top ticket-sellers. In 2008, we sold 5600 tickets and won top-seller honors for the second year. In 2009, we topped our "best" again and sold 5825 tickets and top-seller honors for the third straight year!

Will you help us reach our goal of raising $6000 this year and keep the streak alive?

The NFED is a non-profit organization and is the ONLY organization in the country dedicated to serving individuals affected by ED syndromes. It does not receive any federal funding. Your support - no matter how small or how big - is GREATLY appreciated. Even if you're unable to purchase raffle tickets, please help me spread the word by telling a family member or friend about the NFED or Ectodermal Dysplasia. Direct them to the foundation's website http://www.nfed.org to learn more about this life-altering condition that affects so many individuals, yet often goes undetected for years. Please feel free to forward this e-mail to your friends and family members as an education and awareness tool.


Also, check out this new educational video full of interviews and photos from the 2008 and 2009 Family Conferences! You might just see someone you know!

http://www.youtube.com/watch?v=REvzn1Uaq5s

Thank you for your support!

Kristin

Kristin Matus-Kelso
6509 Legendgate Place
Burke, VA 22015
703.440.9779

ca.kristin@verizon.net

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Hospital Information:

St. John's Regional Medical Center - Oxnard, CA
Childrens Hospital Los Angeles - Hollywood, CA
Childrens National Medical Center - Washington, D.C.
The Johns Hopkins Hospital - Baltimore, MD

Links:

  
http://www.nfed.org   National Foundation for Ectodermal Dysplasias
http://www.youtube.com/watch?v=REvzn1Uaq5s   NEW 2010 NFED Educational Video


 
 

E-mail Author: ca.kristin@verizon.net

 
 

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