Danielle Storhoff

Danielle was born full term on January 20, 2003 with no expected complications. However, she struggled from the beginning to maintain adequate oxygen levels in her blood. Due to the trouble with her oxygen levels, she was observed in the hospital and underwent numerous tests, which led to her having open heart surgery at American Family Children’s Hospital at 3 weeks of age. Danielle’s PDA valve in her heart was surgically closed, while her aorta needed to be enlarged. While recovering from this surgery, doctors learned that Dani also had an undefined lung disease. After a shaky first year of debating whether or not to pursue a lung biopsy, Danielle started to thrive and grow - surgery was avoided. A month after Danielle’s third birthday, Danielle was hospitalized with RSV, typically a ‘really bad cold,’ but for someone with Danielle’s history, it was more severe. As she recovered in the PICU at AFCH, we noticed that her right leg wasn’t moving. A week of tests, questions, and various doctors brought us the devastating news that Danielle had suffered from strokes, which continued and caused her to lose movement in her right arm, as well as the right side of her face. The strokes were caused by Moya Moya, a disease that affects the blood flow to the brain. In March and April of 2006, Danielle went through two separate neurosurgeries – one on each side of her brain – with the goal of “re-routing” blood flow to the brain. One year after the surgeries, Danielle suffered an additional stroke, which affected her left leg. The impact was much briefer and much less severe, but did require an additional hospital stay. Dani returned to the hospital in November 2008, when she was found to have had three more strokes, affecting her left arm and some of her peripheral vision. Again, the impact was much briefer and much less severe than the original strokes. Because the strokes continued past the original neurosurgeries in 2006, it was decided that Danielle should have some additional surgery. In August 2009, she had two more neurosurgeries - again one on each side of the brain - to attempt to re-route even more blood flow. When the surgeon came out to talk to us after her second surgery (in 2009), we learned that Danielle was the first patient to have this particular procedure completed in Madison! The results are in - she has shown tremendous progress since these most recent surgeries! Danielle recovered from the surgeries; she has worked like crazy in therapy; and her physical limitations no longer slow her down too much! Her speech deficits are pretty much gone; her right leg is very functional, but does benefit from the support of a leg brace; and her right arm continues to make progress. Sweet Danielle is now an 8-year-old young lady who has overcome many odds to become the strong and determined person that she is today.

We are grateful for the amazing staff at AFCH and for all they have done to help Danielle become that strong and healthy person! Dr. Iskandar (neurosurgeon), Dr. Green (pulmonology), Dr. Hokanson (cardiology), Dr. Edelman (neurologist), and Dr. Ward (rehab) have been a tremendous blessing in Danielle’s challenging road through the medical world. The nurses in the hospital made sure our entire family was cared for throughout Danielle’s hospital stays. Their tolerance of the insanity that typically occurred during visits from Danielle’s three siblings is admirable! Danielle’s primary nurse, Jennifer, is someone Danielle continues to talk about often. When asked what she wants to be when she grows up, Danielle’s most common answer is, “a Mom and a nurse . . . like Jennifer.” Our family is celebrating three years “stroke-free,” along with more than two years without any overnight hospital stays! However, it is always comforting to know that we have the American Family Children’s Hospital - a phenomenal medical resource - for any future concerns that may develop. Thank you to each and every doctor and nurse who has cared for our family. Thanks also to the Greater Bucky Open for all that you do to help AFCH continue to support the families and patients. Your work is appreciated!

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