RUN FOR RUBY

Running Mile after Mile and straight on to Magic

Karenna Grace (Ruby*) October 22, 2006

Filed under: Pictures of Ruby,Uncategorized — runforruby @ 2:02 am

On November 19, Carlin (Karenna’s mom) and  Jessica are ran Philadelphia Marathon (26.2 miles) with the goal of raising funds for the MAGIC Foundation and its Panhypopituitarism division. We are asking for your help. The MAGIC Foundation has had a dramatic and life-saving impact on Ruby’s life.

Ruby was born with a chronic, life-threatening disorder called panhypopituitarism. Children with panhypopituitarism take required medication at least four times a day and receive a daily injection. Children with hypopituitarism do not produce cortisol, thryoid hormones, growth hormone, estorgen nor testosterone. Many of the children also have related medical concerns; for instance Karenna has problems with hypoglecemia. Other panpit children suffer from issues such as visual impairment, developmental delays and diabetes insipidus.

Because children who have panhypopituitarism cannot fight stress (physical or emotional) without increased levels of replacement hormones, even a minor illness, such as a stomach virus, can lead to a crisis and an emergency trip to the hospital. In Ruby’s short two years she’s been in the emergency room nine times with numerous overnight stays in the hospital. Since EMS will not treat an adrenal crisis play dates and sleepovers that most kids take for granted are not possible or must be carefully planned with someone trained to give an emergency life-saving injection. Navigating school policies and managing doctors appointments and paying for care is time consuming and ongoing. Having the opportunity to talk with (either in person or online) families who share these concerns is important because it helps prepare you for emergencies and for everyday obstacles. This is only a part of what MAGIC has given us.

Since panhypopituitarism is rare, it is often a struggle to find information about it and, especially, to find adequate, informed, medical care. The MAGIC Foundation is instrumental in providing information to parents, educating physicians, and in connecting families. Our family has learned more from MAGIC about how to manage Ruby’s disorder and her life-saving medications than we have learned from the medical community. Those of you who met Ruby know that she is an amazing little girl with an angel’s smile and an unstoppable spirit. Luckily, we learned about MAGIC early in her life. We can honestly say that MAGIC has helped saved Ruby’s life several times. It was from information given to us by MAGIC and talking with other parents that we learned how to manage Karenna’s crisis’, and more importantly how to try to prevent them. From the first day of Karenna’s diagnosis, we have relied on MAGIC. As the doctors were describing panhypopituitarism to us, they gave us information pamphlets from the MAGIC foundation to help explain the disorder.

Every penny of your generous donation goes directly to MAGIC, and is not used for “overhead.” Money raised this year will be used to develop and distribute educational materials for the medical community that will help in the inital diagnosis of panhypopituitarism and ensure that our children receive the best treatment possible throughout their childhood.  A significant number of panhypopit children are not diagnosed quickly enough and suffer more health problems and developmental delays caused by a late diagnosis. The panpit division will also use the funds to help educate EMS on how to save a panpit child’s life; something shockingly few have any information about. Additionally, some of the funds will help defer the cost of the Annual MAGIC Convention. MAGIC tries to keep the cost of the convention as low as possible for families. They know what a large percentage of the families’ money already goes to medical costs, and they realize that this is where families learn new information about the disorder and may be the only time that MAGIC chldren feel “normal.”

All donations for “Run for Ruby are 100% tax deductible. This is truly one of those cases where every dollar counts. For example, your dollar can mean we can print one more brochure, get it to one more NICU and help save one more infant’s life.

Our family has been blessed by our amazing little Ruby and MAGIC. Please help us support MAGIC and its efforts.

*When Ruby was a newborn we sang “Karenna renna roo, we love you”, that roo turned into Ruby. When you ask Karenna her name she says Ruby, well actually she says “Wuby”.

Please donate by clicking the button in the top right corner or send a check or cash to: The Magic Foundation. Attn: Run for Ruby. 6645 W. North Ave. OakPark, IL 60302. Please let us know about your generosity so that we can thank you.

Thank-you for your love and support.

Carlin’s email: cbarmada@comcast.net

Jessica’s email: j77henry@yahoo.com

 

 
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