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, retarded...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 are hopeful as Lydia endures about 5 therapies a week.  Finally, as they explained more they mentioned only about 50 diagnosed cases are currently known. Tom asking the clarifiying question - "50 cases in Milwaukee, 50 cases in Wisconsin?"  Their reply "50 cases in the world." 

We wondered why our dreams were being played out so differently than imagined however we didn't have much time to sit back and let it digest.  Soon after Lydia's diagnosis was her second hospitalization which led us again to Children's Hospital of Wisconsin for a week's stay.  Soon after the hospital stay came visits to specialists which included visits to cardiology, immunology, pulmonology, rehabilitation, opthamalogy, audiology and nephrology among many, many other that soon became routine. 

All told in 2 years Lydia has been hospitalized 6 times to treat seizures, pneumonia, the flu, kidney infection and bronchialitis.  After last year's fundraising efforts started Lydia suffered her 1st seizure.  She suffered a second seizure the day after Al's Run in September and her 3rd soon after in November.  She has been also taken by ambulance to our local hospital where the fabulous and amazing transport team from Children's has come to our small town to bring her to a place we fondly call "home." 

We never thought we would call Children's Hospital of WI "home" but on one of her last transports to Children's a respiratory nurse found us eagerly waiting for 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 so did the tears - tears of joy 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 were 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 only 3 physicians would know our daughter and explain to everyone who saw her about her syndrome.  It would mean that when she became hospitalized these 3 physicians would be the only ones to see her and they would coordinate her care with all the other residents, medical students and fellows who might also see her.  It meant that for the important specialty appointments 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 "Notre Dame" of programs. However, with economic times the way they are 2 physicians that are leaving this awesome program (due to personal reasons) may only be replaced by 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 Lydia's Lucky Charms to walk or run 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 click on the link  and put in her team name: Lydia's Lucky Charms and password:  Lydialu.  Please note that registration fee is for the cost of the run/walk only and unfortunately does not help with any donation efforts for Children's Hospital.