Kevin and I thank all of you for being here to learn a bit more about Cystinosis, to support the efforts of Jenna & Patrick’s Foundation of Hope, and to have an enjoyable evening with your friends and those you love. I feel a range of emotions about the evening, as the topic is difficult, but being surrounded by my family and friends makes these precious moments.
First, I want to share a photo. An organization much like JPFH hosted an event called 24 Hours for Hank in Sandpoint Idaho
After the success of last years event, and considering the amount of fun we had…the board of JPFH decided unanimously that we should have Swing & Bling #2, and now here we sit. This event is the love child of an event committee that could never be matched, even in the professional event planning arena. I can’t name every single person but must quickly utter these last names: Thomas, Sedlenieck, Zarro, Sackheim, Gordon, Walcott, Shelby, and Olson….THANK YOU for giving your time and love and energy to this cause.
As is the case every time we gather people together in the name of Cystinosis, I am excited, nervous, sad, hopeful, tired and completely energized all at the same time. A couple of times each year since 2005, Kevin and I speak aloud about what is a very quiet and private battle. I hope one day that Jenna and Patrick, when they have more say in the matter, will feel that we’ve done them a service by letting people know our story. My friend Francine says “when you take the mystery out of the mystery it’s not a mystery!” I feel this is true and it is why I am at peace letting you know a bit more about what has been and will be for Jenna and Patrick.
I will briefly discuss past, present and future.
In the past four years, our bodies were weary. Lack of sleep comes with any child, and sick kids sleep less. Kevin and I have, as a team, seen what I hope will be the worst of long nights, daily sickness and vomiting, unending doctor visits and a most dreadful fear of the unknown. We know what our children face and we are treating it with medications and medical care that have made them feel better and begin to grow into what has become the present.
Presently, as it relates to being parents of five year olds, we are infinitely happy to see our kids enjoy life. Last summer was the best ever as the kids joined swim team and learned to ride a bike. We watched two very happy kids enjoy the last summer before their school years. But presently, as it relates to Cystinosis, our hearts are weary. A month ago while tucking Patrick in at night I told him for the first time that he has Cystinosis. Just as we are as up front as can be with teachers, friends and those close to us, we know it is time to help our children understand why they have water bottles with them constantly, why they often don’t feel great, and why they need to take so many medications. It is our hope that talking about Cystinosis frankly and honestly will keep the burden light. Presently there are over 30 research studies being conducted around the world. These studies range from the topics of kidney regeneration and cornea regeneration to male fertility and the effects of Cystinosis on the brain and cognitive functioning. Presently the average live span of a Cystinosis patient is 28 years. In the last 6 months, four people have succumbed to the disease, their ages 17, 23, 26 and 41. Most patients receive a kidney transplant before completing high school, and most begin to experience trouble swallowing and lost muscle tone soon after high school age.
All that being said, the future is VERY hopeful. There is a mouse somewhere in a research lab in Southern California that had Cystinosis, and gene therapy has reversed the damage caused by cystinosis to its kidneys and every other affected area of its body. It’s the miracle we need and want, and the research will continue until we find a cure that will alter the present statistics greatly. There will be rough days, tough decisions and a lot of prayers between the present and the future of cystinosis. And while it is difficult for me to imagine a world without Cystinosis, I choose to believe a great discovery lies ahead.
Your presence here tonight means that you are helping to fund this great discovery. The medical progress made through studying Cystinosis has already trickled down to the study of other, more prevalent diseases, such as Huntington’s, Parkinsons, and NASH, a common childhood liver disease…so while it begins with Cystinosis, it could end in any number of miraculous places! It’s truly about progress, research, and believing in something with all your heart.
I’d like to thank my Kevin. He’s shares every responsibility with me 50/50…and never makes me feel that dealing with the kids or this foundation is my “job” since he works all day. We take turns doing meds every other night, he goes to as many doctor appointments as he can, and he truly understands that the tasks associated with Cystinosis are not nearly as hard physically as they are emotionally. I am grateful to have him, and each of you to share the good days and difficult days with. Kevin, my children and all of you make my life sweet…and I thank you.
I say it every time, but must say it again. We are not the only people in this room with heartache. Cystinosis is not the only disease that we want to see cured. Jenna & Patrick’s Foundation of Hope is one of thousands of organizations with a noble cause. We are a couple, a board of directors, a Swing & Bling committee and a room of family and friends, who, for this one night, have made Jenna & Patrick’s Foundation of Hope their cause.
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