Where to begin?

Everyone who hears about and gets to meet Jacob all say that he doesn't look sick.  I would give anything for that to be true!  (Please see the very bottom for updates on Jacob.)

Around January 2007, Jacob's teacher said she was concerned with his motor skills and suggested he be seen by his pediatrician who then sent him to Children's Hospital in Philadelphia.  It wasn't long after that he was diagnosed with Duchenne muscular dystrophy,  a degenerative muscle disease that will cause the muscles throughout his body to break down. DMD is the most common, lethal, genetic disorder of childhood.  It affects 1 in 3500 boys worldwide.  Boys with DMD typically lose the ability to walk between the ages of 10 and 13.  They lose upper body function in their teens and sadly, most will lose the battle to DMD in their early 20s.  Today, there is no cure for Duchenne.  But that does not mean we are without hope.

Duchenne's: We had never even heard of that word before.  It doesn't run in our family so obviously we had no reason to ever worry about it.  How wrong we were.  It doesn't have to be inherited.  It can start in a family at anytime.  Along with Jacob having this illness we have to worry about my daughter being a carrier which can effect her health and down the road we have to have Jacob's little sister Meredith tested to see if she is a carrier which will have an affect on her decision to have children of her own.

It's hard for me to imagine that my only grandson might not be with us past his teens because right now he seems just like any other healthy seven year old kid.  (He is starting to fall down a lot and needs help getting into the car but when he falls he dusts himself off and tells me that he is okay.) But, we know that it's only a matter of time before we will see his decline unless a miracle happens and soon.   

There is hope for Jacob thru research being funded by Project Parent MD and that is why I need all of your help.

The cure for Duchenne's muscular dystophy will also lead to a cure for other genetic diseases!  Giving to Parent Project Muscular Dystrophy can help support a cure not only for Duchenne's but also for other genetic diseases, such as: heart, breast cancer, cystic fibosis, diabetes and colon cancer. THE LIST GOES ON AND ON!

I know that some of you are going through hard times of your own but if you can only give $1.00, it will be one dollar more towards a cure for Jacob and these boys.

I'm asking that you email his fundraising page to everyone you know and for them to do the same and so on and so on and each dollar will be one more dollar towards reaching our goal.

I will be doing local fundraisers for Parent Project MD as well but this is a way those of you who have asked how you could help to make a difference and I can't tell you how much your donations will be appreciated.

All funds support Parent Project MD , an organization dedicated to helping fight Duchenne MD, which is the disorder that Jacob has.  85% of the money PPMD raises is dedicated to research and family education concerning Duchenne MD.  The research PPMD supports may directly benefit Jacob.  This research is leading to improved standards of care and may improve the lives for those living with Duchenne MD.

Parent Project Muscular Dystrophy has made great strides in the DMD/BMD community by funding high impact research, fighting to create standards of care, and providing up to date information to families regarding DMD/BMD treatment and care.  Because of fundraisers, PPMD was able to fund a grant to PTC Theraputics, Inc., who just a few weeks ago, announced encouraging data from a Phase 2 clinical trial.  With your continued support and the diligent work of researchers, we may see an end to the suffering caused by Duchenne/Becker Muscular Dystrophy within Jacob's lifetime!  Additionally, Wyeth has just completed a Phase 2 clinical trial for men with Becker's Muscular Dystrophy that looks promising.

Please visit www.projectparentmd.org to see all of the wonderful things that this organization is doing for these boys.

You can make tax-deductible donations directly through this secure website. You can send your checks made out to Parent Project Muscular Dystrophy (with Jacob Shive marked clearly in the memo line) :

Parent Project Muscular Dystrophy

For Jacob Shive

158 Linwood Plaze, Suite 220

Fort Lee, NJ 07024

Warmest regards and with much thanks,

Jacob's MomMom - Donna

Offline Donations:

Beth B. Wilson - An additonal $50.00 from the sale of her adorable matching crocheted dog leashes and poop bag holders:)

Jamie - I want to personally thank Jamie for giving me a check made out to ParentProjectMD for $100.00.

State Auto Insurance Co. Employees - A personal thanks to Heather's fellow employees at State Auto from Jacob and the family.

Miriam Eisbart - $10.00

Judy and Susan - $30.00

(08/27/2007) We were out to Cinn. Children's Hospital last week to see Dr. Wong and a list of other specialists.  It was like a roller coaster ride.  One Dr. would give us promising news and then the other would talk about wheel chairs and spinal fusion and heart disorders associated with Duchenne's.

Dr. Wong was very upbeat and she was happy with Jacob's range of mobility for his age and his size.  She told us that there are 4 different clinical trials in the wings, 3 that could be of help to Jacob, but that we have to keep him as mobile, healthy and happy as we can because it could be as long as 5 years for any of them to be released.  She showed us more stretches to do with Jacob and once he has the okay to start Deflazacort (steroid) after his blood work comes back we have to keep him on a very low sodium diet and regulate his intake of fatty foods.  They don't want to see them gain any weight on the steroids.  Luckily Jacob is thin and tall so we have a head start with that and he eats pretty much everything so we don't have to worry about that.

Please keep your prayers coming for Jacob so that he will benefit from these treatments once they are available and please pray for the researchers doing these trials so that they are safe but swift in outcomes for these boys.

10/25/2007

Jacob has started to take Deflaxacort as of last month.  We were told that we may not see any changes in him physically till at least 2 months but we are hoping that this will help him with strength in his legs to help him with his falling for a while.

He is taking Hippotherapy once a week which is Equestrian Riding Therapy to help with is balance and his muscles in the hip and stomach area and he absolutely loves it.  The horse that he rides is named Cody and he gets to lead him back to his stall.

He also loves swimming which is the best exercise (not taxing on his muscles) for a boy with Duchenne's.

There are many therapies going to trial soon and it could take up to if not more than 5 years to be available so we need to keep raising funds to help the researchers continue and we need to keep the prayers coming for Jacob and these boys.

 12/28/2007

Jacob had an appointment at CHOP yesterday.

The doctor was pleased with the way Jacob is maintaining his weight and that he grew 1 1/2 centimeters and that the Deflaxacort seems to be helping Jacob with his strength and that he is not falling down as much as he was 3 mos. ago.

He isn't happy with the fact that Jacob doesn't have heel contact when he is walking so he wants to put Jacob's legs in casts for one week, take them off and put them back in for a second week to try to improve the flexibility of his heel cords and tendons.  Hopefully they will reduce some of the damage done by the DMD.

On a happier note the doctor told us that when Jacob goes back in July he will want to take a skin biopsy from Jacob to send to Dr. Wilton in Austrailia to be tested with the "cocktail" Jacob needs for exon skipping.  He has started trials with the exon skipping in four boys a few months ago.  These trials were just to see if they produced any dystrophin in a single muscle and if there were any negative side effects.  So far the results are positive so they are continuing with the trials.  This is not the "cocktail" that Jacob needs but Jacob's doctor says that Dr. Wilton is ready with all the cocktails for all mutations.  The only problem is even if it is effective it will need to be repeated every four or five months to keep the muscles producing dystrophin and the treatments as of now will be $100,000.00 a treatment.  They are working on different ways of delivering these coctails so hopefully they will come up with a more effective treatment that will last longer and will cost less.  This is only a treatment and not a cure but it will upgrade the boys to a lesser form of DMD called BMD that could buy them time till a cure is found.

Please keep praying for Jacob and these boys.  I know I speak for them and all the parents when I say your donations are greatly appreciated and we thank you from the bottom of our hearts!