Kelly's Upside Down Ball

Kelly's Upside Down Ball was founded in 2003 by Robbin Lyons. The benefit honors her daughter Kelly, who was diagnosed with acute lymphoblastic leukemia at the age of 19 months. Kelly also has Down syndrome. Today she is a four year old cancer survivor. During Kelly’s treatment, Robbin was moved by the struggles of other families of individuals with Down syndrome, who were also facing a cancer diagnoses.

Robbin and Kelly Lyons

Kelly's Upside Down Ball benefits families challenged by a dual diagnoses of Down syndrome and cancer. Children with Down syndrome have a 20% greater chance of becoming affected by childhood leukemia than children without DS. Childhood cancer is the number 1 killer of children in the US.

Patients with Down syndrome and cancer and their families have very special needs in addition to those of the typical cancer patient. The dual diagnoses of Down syndrome and cancer can devastate a family. The patient suffers from a tragic disease and must undergo more than two years of difficult treatment, with the constant risk of life ending infection and other complications. The emotional and physical strain of caring for a child with a life threatening illness, coupled with special needs can be overwhelming. And the financial strain of the medical treatments and therapies can cripple a family’s ability to keep up with the bills. Even the best insurance plans won’t pay for everything these families need.

Kelly's Upside Down Ball currently holds benefit events in two states, Indiana and Wisconsin. Each is a separate fund. Indiana’s Upside Down Fund is administered by The Indiana Down Syndrome Foundation, and Wisconsin’s fund is administered by The Wisconsin Upside Down Foundation. Each of these charities are 501©3 tax-exempt organizations, which provide information, resources, and support to individuals with Down syndrome and their families. The Upside Down Fund directly benefits families with financial gifts to cover some of the many expenses these patients incur that are not covered by insurance or government aid. The fund also supports pediatric cancer clinics with funding for special programs like the cancer bead program at The Children’s Center for Cancer and Blood Diseases in Indianapolis, the Kellbell Celebration Bell Project and providing hand held video players and videos for young patients. The Indiana Down Syndrome Foundation and The Down Syndrome Association of Wisconsin also provide a variety of other support services for these families.

The Upside Down Fund directly benefits these patients and their families for the duration of treatment and beyond. Cancer patients, who have Down syndrome and their family members also get to attend the Upside Down Ball at no cost. It is a chance to celebrate these courageous lives as well as give the families something to look forward to. I hope you'll consider donating to this great cause. It's your chance to help families faced with a difficult dual diagnosis. Donations are tax deductible. The Indiana Down Syndrome Foundation is an IRS recognized 501(c)(3) nonprofit organization. Tax # 35-1957015. The Down Syndrome association of Wisconsin, Inc. is an IRS recognized 501(c)(3) nonprofit organization. Tax #36-5284027.

Jillian's Story

Our life before diagnosis was one of pure delight.  Jillian was on the verge of being potty trained and she was walking up and down stairs all by herself.  Her gross motor skills were almost on track with that of a typical child and we were having difficulty finding tasks she couldn’t do or try.

That was then, this is now.

One warm January evening seated at the dinner table, Jillian looked at me and signed the word “sick”. I asked her if she was sick or someone else. She said she was sick and that’s how our journey began. The next day I made a visit to her pediatrician who ordered “stat” blood work. A few minutes after we arrived home, I received a call. Her pediatrician told me that she had an appointment scheduled for the next day at Riley Hospital and that Jillian couldn’t eat or drink anything after midnight.

The next day our fears were confirmed and she was diagnosed with Leukemia (ALL). Thus we began a month long sleepless night. Jillian woke almost every night asking to eat. Her favorite food at that time was chicken nuggets. We even went so far as to put a microwave and dorm sized refrigerator in her room so I wouldn't have to trudge up and down the stairs all night long. After the first phase of treatment we hoped for a break but Jillian got a bilateral ear infection and pneumonia. Thankfully, we avoided a hospital stay and she recovered at home.

We've only been inpatient 3 times since then and we feel fortunate. Diagnosis was over a year ago and Jillian has made tremendous growth since then. She is going to school and riding the school bus 4 days a week. She loves everything about school and asks to go every day. Her language skills are improving daily and she’s talking a bunch. Prior to diagnosis, she was on the verge of talk, but being “couch bound” for a month really started her voice working overtime! While she still likes her chicken nuggets, she eats everything and loves green beans and broccoli. Her favorite color is red and she loves balls and music/singing, gymnastics and playing with her brother, Jacob.

Jillian is a complete joy to be around and is almost always happy. She’s so smart and knows hundreds of signs as well as tons of words. We can’t wait to take a “Wish Trip” when Jillian is off treatment. Since she won’t be finished until March of 2009, we have a little time to plan the trip. Jillian just wants her “port” out and to be done with our clinic visits. I feel we are very fortunate that Jilly Bean is only 4 years old. Hopefully she won’t remember too much of this time when she gets older.

On behalf of Ryan and my entire family.
I would like to thank you for allowing us funds from Kelly's Upside Down Ball.

Dealing with 2 cancer diagnosis in the same home can be traumatic. Having to worry about paying bills makes it even harder. Your money came at a good time for us. We used it to help with our trip to Orlando, Florida and Disney World. Although Ryan is still small, there was a lot of joy in his eyes with the music, colors and characters. We owe part of that joy to you for including us as recipients of the benefit funds.

Ryan is in remission now and my oncologist tells me I am cured. We have a much greater appreciation of life since going through this.

Please know that you made a difference in our lives by your generous gift.

God Bless you and Kelly for all of the hard work that makes this possible. Thank you to the Indiana Down Syndrome Association for approving us as recipients of Kelly's benefit funds.