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. Lydia was not yet 6 months old and all that we knew was that she had some sort of genetic disorder and had already been hospitalized for almost a week from a kidney infection. 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.
As we arrived to the genetics office on that warm fall day we were led into a room with a small round table and a view of the parking lot. There the genetic counselor quietly told us that our daughter had a very rare genetic syndrome called 9q34.3. As she spoke she handed us a piece of paper that described the possible characteristics of the syndrome. Immediately jumping off the page were words like: 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? We were also told that most kids don't talk or have a very limited vocabulary. Some also never walk and if they do it is between the ages of 2 & 7.
However, even with this information we have never given up on the possibilities for Lydia. Until age 3 she had 5 therapies a week and at age 3 she started in the public school system in their special education program. During the summer Lydia will receive 2 hours of therapy twice a week as we strive towards her goals we have for her. At the time of her diagnosis only 50 diagnosed cases were known IN THE WORLD. Now there are over 120 and we are connected with most of the families worldwide via Facebook, Skype and our own website for 9q34.3.
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's end to 2009 and beginning to 2010 were very rough as she was hospitalized 3 times in just 25 days. She suffered from strep in December with a 3 day stay, her worst seizure to date in early January requiring a 5 day stay with a virus and a 4 day stay in the Pediatric ICU after having a virus causing her to have a 105 fever for 6 days. 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. This program is to us the best of the best. However, with the current economic times this program is searching for new physicians as we are down to just 1. This isn't enough!! This program actually calls for 4 physicians with the case load of all our "special kids."
Words can't describe the immense gratitude we feel towards Children's for all they have done to help Lydia and us get through her journey. They took an unknown syndrome and made it seem as if they had treated it for years. They are proactive, caring and all that you need in your life when the unthinkable happens - your child, your baby is ill. Most of all they listen to us- the parents and use our gauge and gut to help guide their care. We all work together as a team to provide the best care and best possible outcome for Lydia.
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.
I am dedicating this year's fundraising efforts in honor of Abby Uren who was a special girl who passed away in March just shy of her 4th birthday. Children's Hospital was there in her last days doing everything they could for her and her parents however the Lord had different plans. Our efforts this year are in memory of Abby and in honor of her parents who did EVERYTHING AND ANYTHING for their little girl to make her the best she can be.
For more information on Lydia along with health updates and pictures please visit her site for Lydia's Lucky Charms (not updated but will be by end of May).
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!