The Hadley’s have three children, two of whom have now been diagnosed with Niemann-Pick type C.
Niemann-Pick type C disease is an autosomal recessive disorder affecting lipid metabolism (the breakdown and use of fats and cholesterol in the body), in a way which causes harmful amounts of lipids to accumulate in the spleen, liver, lungs, bone marrow, and brain.
This condition is inherited in an autosomal recessive pattern, which means two copies of the gene must be altered for a person to be affected by the disorder. Most often, the parents of a child with an autosomal recessive disorder are not affected but are carriers of one copy of the altered gene.
Type C is characterized by onset in childhood, although infant and adult onsets are possible. Other signs include severe liver disease, breathing difficulties, developmental delay, seizures, neuro-degeneration, increased muscle tone (dystonia), lack of coordination, problems with feeding, and an inability to move the eyes vertically.
The Hadley’s have been faced with enormous medical costs. The drug (Zavesca) their children are currently on costs 9,000 per month each, and although it may allow them to “buy time” so that their “children may participate in future trials, and potential therapies,” it is not a cure. As with anyone facing such a huge financial burden, they could use our help. On their website they say:
Many people have asked how they can help. Most importantly, we ask that friend’s and family keep our children and family in their daily prayers for we firmly believe “with God, all things are possible.” There is no greater value to us than the gift of prayer, but we face the reality that funding for medication, therapies, and potential research is extremely high.
So, I would like to ask you once again to remember Peyton and Kayla Hadley in your prayers. More specifically, we will be praying a Nine Day Novena (March 25th – April 2nd) for them at the request of their parents.
For those of you that can do more, I’d also like to ask you to consider a little extra Lenten alms giving, as we prepare for Easter and participate in the
It is simple and fun… Here is what you do:
1. I have added a Paypal “Donate” button to my sidebar. All I’m asking you to do is make a donation IN ANY AMOUNT that you can spare. You can donate one dollar, two dollars, five, ten, twenty or more. You decide. The dollar amount is entirely up to you.
2. Then, come back and leave your name in the comment box of this post for a chance to win your choice of one of three great prizes–the prize is my donation to the Easter Hope Challenge. (You do not need to leave the amount of your donation in the comment.)
Want to increase you chances of winning?? While every donation receives an entry, for each $25 increment donated another egg goes in the basket for you. For example, a donation of $1-$49 receives one entry, $50-$74 equals 2 entry’s, etc. It’s all up to you!! You can decide how much you want to donate, and if you win–you choose your prize!!
Last Easter we were able to give the Hadley’s $3250!! Every little donation adds up, and it would be so nice to be able to do the same for them this Easter as well!!
The contest will be open for 2 weeks, and as the days go by, I will write the names that appear in the comment box on little pieces of paper and place them inside plastic Easter eggs. On Wednesday, April 8th, Chiquita will choose an egg from the basket, and reveal the winner. There will be ONE winner and that winner will choose ONE of the three great prize options above.
If you would like to participate but would rather not use paypal, email me (my address is listed in my profile) and I will be in touch.
All funds donated will be given to the Hadley’s in the form of a check to be deposited to the Hadley Hope Fund at Liberty Bank. Hadley Hope Fund is a Federal 501(c)3 Non-Profit Organization. Donations will be used for medical expenses and to accelerate ethical scientific research for a cure for all afflicted with Niemann-Pick Type C Disease.
So, what are you waiting for? Help us spread a little EASTER Hope!