Angela and Han Herrick, parents, co-founders and key fundraisers for Katie's Clinic, 530-899-7790; 530-864-3234 firstname.lastname@example.org
Alexis Dream fundraiser: www.alexisdream.org
Paige Nues, founding parent of Katie's Clinic, Director of Family Support for
International Rett Syndrome Foundation (IRSF), 510 499-3858 (cell),
Pat George, Katie's Clinic program coordinator, 510 428-3885 x5458,
Sidebar: 74 words
"Alexis' Dream," is a fundraiser for Katie's Clinic for Rett Syndrome at Children's Hospital Oakland, is set for October 10, 2009 in Bidwell Park. The event begins at XXXX a.m. with picnic and fun zone at 1 Mile. The goal is to raise awareness and vital funding is this desperate financial climate. For information to participate or donate, visit www.alexisdream.org
Helping Families Face Challenges of Rett Syndrome
Written By Tinka Davi
When Han and Angela Herrick learned on November 10, 2006 that their daughter Alexis had Rett Syndrome, they were overwhelmed. The diagnosis changed their lives forever.
The couple rallied around Alexis, searching for ways to make her life more comfortable and raising awareness of the disorder. On October 17, 2009, the Herrick’s are launching a fundraiser, "Alexis’ Dream,” to support Katie’s Clinic for Rett Syndrome at Children’s Hospital Oakland.
Rett Syndrome is a debilitating neurological disorder diagnosed almost exclusively in females and occurring in one of every 10,000 female births in the U.S. Girls appear to develop normally until 6-18 months when they enter a period of regression, losing speech and motor skills. Most develop repetitive hand movements, irregular breathing patterns, seizures and extreme motor-control problems. Rett Syndrome, the most severe form of autism, leaves its victims profoundly disabled, requiring maximum assistance with every aspect of daily living. There is no known cure and few treatment options.
Alexis, younger sister to Austin,16, and Ariana,11, and the older sister to Ava,,2, was born June 8, 2004. “The birth was normal,” said Angela. “She was a perfect baby who was the spitting image of her Daddy.” However, she noticed Alexis missed some six- and 12-month “baby milestones.” She began to lose mobility and display delayed development typical of Rett. Angela raised her concerns to her local pediatrician, Dr. Asarian, who shared her trepidation and referred her to medical professionals where Alexis underwent myriad neurological tests. A blood sample was sent to one of six Rett testing centers in the U.S. When the results confirmed Alexis had Rett, the Herrick’s sat down and cried.
Alexis has a dazzling smile and hazel eyes that sparkle and speak volumes even if her mouth utters not a word.
Rett Syndrome’s most severe disability is apraxia, defined as having the will to move, but the body can’t coordinate physical motion. Girls frequently are diagnosed as having autism or cerebral palsy. They are withdrawn during regression, but then become social again. That’s different from autism. “Regression for parents is the worst nightmare,” said Angela. “Everyday some ability goes away and the child is aware of the changes.”
The disorder is random and life changing for family, relatives and friends. Parents will care for the child forever. Girls can live well into adulthood, but won’t go to proms and never marry. Most frequent causes of death are complications from pneumonia or seizures, or a SIDS-like passing in sleep, said Pat George, Katie’s Clinic Program Director. “It’s heart breaking; they are so loving.”
Plans are in full swing for the “Alexis' Dream” fundraiser set for Oct. 17, 2009. “Giving in an up economy is commendable, but giving during this downturn is truly philanthropic because pediatric diseases and disorders do not disappear during a recession,” said Angela. “Children’s Hospital has never turned away families for inability to pay and that’s why it’s important to continue to seek support. We need to insure through our fundraising that CHO is able to uphold its high standards of service.”
Katie’s Clinic is the only one of six in the U.S. where patients (from babies to adults) and parents see all specialists in one visit. The clinic serves the Western states, including Hawaii, and recently assessed its first international family from the Philippines. It provides initial evaluation and ongoing coordination of care and support, services that are invaluable. “It’s a gold standard for Rett clinics,” said Pat.
The clinic offers consultations to schools. “The girls do academic work, learn and have memory, but they can’t write or stack blocks,” said Paige Nues, founding parent of Katie’s Clinic, which is named for Paige and Jesse Nues’ daughter, 6½, and older sister to Melissa, 2½, and Abigail, 14 months.
“Katie’s diagnosis turned us into a world of disability and children’s health issues,” said Paige. After visiting the Rett Syndrome Clinic in Houston and talking to other families, they saw a need for a local clinic. Children’s Hospital of Oakland was open to the idea and Katie’s Clinic was founded.
Dealing with Rett is not easy, said Angela. “Some days we win the battle and some days we don’t, and we spend a lot of time behind closed doors in tears. But we love Alexis so much. She will always need us and always have a special place in our life.”
Thanks to the Herrick’s, generous donors and the success of Alexis Dream and other events, many Rett families will benefit from the services of Katie’s Clinic and Children’s Hospital Oakland.