Thank you for visiting Lydia's fundraising page for Children's Hospital of Wisconsin. We appreciate all donations - no matter how big or small. You are making a difference...one child at a time!
Read more of Lydia's story....
October 4, 2007 changed our lives forever. It would be the day that after 4 months of suspecting and 6 weeks of waiting a genetic test showed Lydia had a rare disorder called at the time, 9q34.3, now named Kleefstra syndrome. Lydia who had already been hospitalized for a kidney infection had just began her journey of hospital visits, ambulance rides, tests and physician visits. We often scratched our heads wondering if we would soon wake up from a dream that didn't include a hospital, many physicians and now waiting for a genetic test to share the fate of our child.
We will never forget the day the genetic counselor shared the news with us. It was a nice warm, fall day where we were led into a small room with a round table overlooking the parking lot. It was there that the counselor told us that she had this rare genetic syndrome that at the time only 50 others in the world had been diagnosed with (now there are about 150). As she spoke she handed us a piece of paper that described the possible characteristics of the syndrome. Immediately jumping off the page were the universal characteristics for the syndrome: Mild to severe mental retardation and low muscle tone. Tears fell on those words that made them all the more blurry to see and understand. What does this mean? What will she be like? Our daughter, mentally impaired...really? This wasn’t part of the dream of having a little girl. At the time the only other little details they were able to share is that most kids have very limited vocabulary as well as some not able to walk and if they do it is between the ages of 2 & 7. The final departing comment when we asked what she would be like was “Lydia will tell us her story, she will guide her destiny.”
However, even with this information we have never given up on the possibilities for Lydia. We made sure she saw the best Dr.’s and started her therapies immediately. Lydia had therapy in our home until age 3 through a county program and at the age of 3 started in the public school system in the special education program. When school is in session and out of session Lydia receives therapy in a medically based setting 2 hours twice a week as she strives towards her goals we have for her.
When Lydia was originally diagnosed we lived in a flurry of scheduling specialist appointments, having ER visits and hospitalizations. She was sick often and we didn't have time to sit back and let us digest what we learned. Lydia was hospitalized at 4 months of age at Children's Hospital of Wisconsin and again a few months later. Along with her hospitalizations she also sees many specialists at Children's which include cardiology, immunology, pulmonology, rehabilitation, opthamalogy, audiology and nephrology among many, many other that are now routine for us af ew times a year.
All told in 3 years Lydia has been hospitalized 11 times to treat seizures, pneumonia, the flu, kidney infection, bronchialitis, strep, adenovirus and at one time an unknown virus. Lydia was hospitalized in 2009 and beginning of 2010 three times in just 30 days with one visit to the local ICU where she was for 5 days with a 105 fever. Lydia also has been taken via ambulance by the caring and amazing Children's Transport team about 6 times from our small local hospital to a place we can call 'home' - Children's Hospital.
We never thought we would call Children's Hospital of WI "home" but I'll never forget on one of her transports to Children's a respiratory nurse found us eagerly awaiting them at our local emergency room. As the nurse approached us he gently took Lydia to put her on the bed and quietly said "shhhh baby....we are taking you home....we are taking you home." As the words came out my eyes started to water as we knew that only Children's Hospital of Wisconsin could do right by Lydia and truly give her the care and attention her rare disorder calls for.
Our world would be vastly different for Lydia if we didn't have Children's Hospital close by. In January of 2008 we became honored and proud as Lydia was accepted into the Special Needs Program at Children's. While those with healthy kids pray their children never become part of a program like this we rejoiced when we found out Lydia was welcomed in.
What would this mean to Lydia and to us? It would mean that the physicians and nurse case managers would know our daughter and explain to everyone who saw her about her syndrome. It would mean that when she became hospitalized the staff would coordinate her care with all the other residents, medical students and fellows who might also see her. It meant in the beginning when we were just finding out about Lydia at the important specialty appointments when we were so lost a nurse case manager would accompany us and take the important notes when sometimes the tears wouldn't allow a pen to be picked up by one of us.
As you consider donating or joining our walk and run team-we think not only of Lydia's lifelong journey but all the other children this hospital system helps. Think of the ones who have cancer, the ones who are born premature, the ones who disorders of the heart - the ones who live and the ones who have died. As we walk the halls several times a month for Lydia's appointments our heart goes out to all the amazing parents and kids who also walk the halls or worse are there for days or months on end to seek the excellent care for a better life. They need your help, whether it be a $1, $2 or more. They need you to make their journey that much easier.
Thank you for reading about Lydia and considering a donation in honor of her team. All donations made to this page and Lydia's Lucky Charms will be earmarked for the program that we felt has 'saved us from drowning' - The Special Needs Program.
For more information on Lydia along with health updates and pictures please visit her site for Lydia's Lucky Charms.
If you are interested in joining her walk/run team called "Lydia's Lucky Charms" we welcome you to do so. Please check back soon to learn more! Runners and Walkers welcome!