However, what amazed me more was the passion Kirby’s special ed teacher showed toward her students. I don’t know if I could name another person who’d be willing to take a class full of wheelchair-bound students downtown on public transportation. Yes, that means loading all the students on a train, navigating through the bustling Union Station, and making that mile-long trek to Michigan Avenue. All so that each of these students could enjoy the beauty of Millennium Park. So, naturally I took the opportunity to step out of the office and enjoy the afternoon with her.

It felt so incredible to know that Kirby spends her days with a teacher who is so devoted to her students experiencing life like any other high school student. So, as I walk to work each day, I’m so grateful that Kirby is in the hands of a woman that helps her explore this beautiful city.

The Foundation is actively seeking new participants for The Seventeenth Annual “Fore Kirby” Golf Fun Raiser.

Date:  Friday, June 1, 2012

Where:  Ruffled Feathers Golf Club

How will the proceeds from the Golf Fun Raiser be used?

Your contribution will help us to fund researchers currently seeking funding from The Children’s Medical Research Foundation, Inc. to continue their work toward a cure for Sanfilippo Syndrome. All expenses for this event will be paid by the Foundation’s founders, Sue and Brad Wilson, and the players.  This means that 100% of your donation will go directly to the Foundation. The Children’s Medical Research Foundation, Inc. is a public 501 (c) (3) charitable  corporation so your gift is tax deductible under the IRS code.

How does the Golf Fun Raiser work?

Approximately 24 golfers will secure pledges from their friends & associates for each of the 18 holes of golf they will play. Upon completion of the round, score cards will be collected from each player and the Foundation will then contact all of those who have pledged with the results of the their player’s round & the total amount due.

Interested in joining the fun?  Please contact Sue at (708) 784-0631 or curekirby@sbcglobal.net to learn more.

This past week we celebrated Kirby’s 20th birthday. As the day approached, I couldn’t help but have some bittersweet feelings. I thought back to the story my

parents tell about Kirby’s diagnosis, when the doctor told my parents, “Well, enjoy her while you have her.” On that day, none of us knew what to expect or how long Kirby would be with us. After that day, we were all scared as to what the future may hold.

However, over the years we learned to celebrate Kirby’s achievements and shift our definition of success. We learned to celebrate all that we have learned from Kirby, and find happiness in the time we share with her. So, on April 15, 2011 we did just that. We celebrated with friends new and old.

Kirby gained a new friend, Abi who shared her passion for baking with our family. It felt wonderful to know that even a person who has only known of Kirby for a short time, wanted to make her day special.  Abi’s Scrumdidiliumptious cupcakes filled all our bellies and really got the party started.

While “partying” in Kirby’s classroom, it was wonderful to see how hard her teacher, Jackie Gay worked to include Kirby in activities that other kids her age would enjoy. With that said, I must confess that after 13 years of competitive tennis, Kirby did beat me in Wii Tennis. But really, who would have thought that a special education classroom would have a Nintendo Wii and an iPad for the students to use in classroom activities? Kirby is truly in an amazing place.  Jackie, also surprised us by giving Kirby’s wheelchair a birthday makeover, with pink sparkles everywhere. After that, Kirby really looked like a true birthday princess.

Kirby’s birthday celebration continued that evening with a pizza party and even more baked goods from our wonderful neighbor, Claudia. The evening celebration was wonderful as our whole family came together to just spend time relaxing with Kirby.

At the end of the night, I looked back on the day. It was incredible to see how many people came together to make sure Kirby had a wonderful day. Kirby had a house full of flowers, gifts and cards, a decorated wheelchair, baked goods from new and old friends, and a group of friends and family that were willing to do anything to make her day special. On that one day, I didn’t think a second about the uncertain future. All I thought about was Kirby, and I was truly happy.

As I continued to look at photos, I was saddened as I saw her body and brain deteriorate.  It scared me to think about how much had been lost as the disease attacked her brain.  Now that she is confined to a wheelchair and severely mentally handicapped, does she remember the bond we had? Does she remember all the fun and carefree time we spent together?

It was that fear that led me to think about faith.  Not necessarily faith in God, but faith that when our eyes meet, she is remembering.  Faith that regardless of the disease, she knows I am her sister and her best friend.  Although a doctor couldn’t tell me for certain whether she has the mental capacity to remember, I must believe she does.  That belief motivates me to continue to be the best sister I can be, and support Kirby throughout her daily fight with Sanfilippo.  It has taken so much from my sister, but I have faith that it will never take away the relationship Kirby and I have always had.

They say Kirby is a “special needs” child, which makes one think that she is challenging to care for and keep happy.  But really, Kirby loves and appreciates all the things that we overlook, particularly during the holidays. Kirby appreciates it when I get down on the floor to her level and hold her hand while I watch a Christmas special on TV.  She appreciates holiday shopping trips with me.  In fact, I bet she even appreciates the little sip of champagne she had from my mom on Christmas Eve.  Her life is her relationship with other people.

So for the rest of the holidays, my focus is relationships.  I have an opportunity to spend my last few days at home with all the people I care about.  I am not going to let myself be consumed by the holiday chaos, I am just going to look around at how lucky I am to be surrounded by such wonderful people.  Thanks Kirbs for showing me how to enjoy the holidays!

As I grew older, I watched Kirby’s body deteriorate and I slowly began to understand where my parent’s tears were coming from.  Kirby was my sister and my best friend. It was hard to escape the thought that, “No doctor knows how to prevent this disease from attacking my sister.”  So, our family made a commitment to Kirby and the rest of the children suffering from Sanfilippo that we would form a foundation to fund the research of a cure.  I knew that no matter what happened to Kirby, I wanted to know that I had done everything possible to try to save her.

Even at a young age, Kirby changed all of us.   When any of us were on the brink of tears, her positive attitude and determination empowered us.  Looking back, it really is incredible that the child who was dealing with the loss of her speech, mobility, and basic independence skills was the one keeping all of us positive.  Kirby united us and made us into a family capable of working together to raise $3.2 million toward the research of Sanfilippo.

For me personally, Kirby taught me how to live with the unexpected.  I have learned to work hard to change what I have control over and care for those I love.  I can control Kirby’s quality of life and I can work to make her as happy as possible, day by day.  I love taking Kirby on walks so she can see as much of the world as possible.  She has taught me so much, so it is the least I can do.  Now, I ask one thing of you.  Keep reading, and share Kirby’s story.

Now 17 years later, although Sanfilippo has taken its toll on Kirby, she continues to defy her affliction with seemingly endless resolve, all the time with a smile. A smile that brings us reassurance of her comfort and delight in her moments of happiness — a reminder of her amazing grace. She is our hero.

As her battle continues, our dream of a cure could come true, for Brad and I have received news of a breakthrough this year. Dr. Haiyan Fu of The Center for Gene Therapy at The Research Institute at Nationwide Children’s Hospital in Columbus, Ohio, is ready to bring her 11-year-old gene therapy program to human clinical trial. Joining forces with other families and foundations, we hope to raise $1 million to fund the studies required by the FDA to bring her work to fruition.

The price to fund this and continue to support other valuable research might seem insurmountable. But all Brad and I have to do is remember what doctors first told us 17 years ago: Nothing can be done. Enjoy her while you have her. Then our thoughts turn to Kirby. Her fortitude must not be in vain. No matter what the future holds for her, our mission is still for her. Because it is her story that is repeated in hundreds of families around the world, hundreds of stories shaped by one cure. And it has been your faithful belief in our mission that has allowed Kirby’s story to be written and your unwavering support of The Foundation that has helped research to reach this level. It can be done.

We ask that you think of Kirby, and in her honor, continue to support The Children’s Medical Research Foundation and its mission of a cure.

With gratitude,

Sue and Brad Wilson