In 2012 both our eight year old daughter, Kayleigh and our 5 year old daughter, Alannah were diagnosed with a rare neurological defect called Chiari Malformation 1.5. Rarer still was the fact that they were not twins and to further the rarity, they both had other complicating factors of hydrocephalus and pseudo- tumor for Kayleigh and scoliosis and a syrinx, a fluid filled cyst, that spanned the with and most of the length of Alannah’s spine. We had countless MRI’s and testing, three brain surgeries in 4 months and many days in ICU and the Neuro floor at Children’s Hospital of Wisconsin (CHW). We credit the Neurosurgery department and Dr. Andrew Foy with diagnosing and saving our girls from this disorder. Our girls continue to heal and deal with pain, headaches, doctors appointments, physical therapy and all that accompanies this disorder but as we all healed we knew that we needed to give back to the amazing people and hospital that saved our daughters from further harm.
We knew that raising money for just Chiari would be very difficult because of how rare it is and also our girls were being seen by doctors in Neuro-ophthalmology, Orthopedics, Neurology, and now the Pain Clinic. Finally, our hearts will always have a special place for the MACC Fund and children with cancer because it was the charity that the girls Grandfather helped start, the charity that introduced Shannon and I to one another and the charity that we have both been so involved, over the years. So an idea of raising money for the Neurosciences department began to take shape; which would be able to involve so many more people and help more children and even help the children with brain and spinal cancers. The PNUT Fund was born! As we have shared this idea it has grown and taken on a life of its own mostly because of the talented and generous people that have given their time, talents and financial support. As we continue on this road set for us. We know that we will meet many more people, like you, that are being put in our life to help the PNUT Fund and Children’s Hospital of Wisconsin Neurosciences Department help the children that suffer from these debilitating disorders.
For our inaugural event we are so excited to partner with American Girl® to present the American Girl Fashion Show® and bring the American Girl® experience to 1200-1500 girls, parents, grandparents and friends in Wisconsin. Won’t you join us however you can using the talents you are blessed with giving a hand to the hands that help our children.