Meet Naomi and Deanna Harry. Most of you got our Spirit Jump email with their names listed. These two young girls both suffer from Duchennes. Their parents have started a Facebook group for them. They have posted a note telling their story and I thought it would be nice to share it with you. The nomination process is over so you won't be able to vote but I will let you know if they get on the show.
I asked everyone if they heard that Extreme Home Makeover is coming to Western Mass. Humbly, it is to ask you to nominate us. For those who do not know, 2 of our daughters have Duchennes Muscular Dystrophy. This is a progressive degenreative disease that destroys muscle tissue as the child grows older. Eventually the ability to move will be lost and will result in death. This may sound harsh, but for us is no more then Life. Naomi, aged 9, is already to the point where her walking is a hardship. If we are blessed she will make age 10 or 11 before she is totally wheelchair bound. (She already uses a wheel chair extensively).Our house is a 16 year old modular with no way to reach the living area on the first floor without climbing stairs. Naomi has not been able to use stairs for 2 years now. The girls room is currently on the 2nd floor. Matt and I pretty much have to carry her upstairs and help her down. Children grow and it is very hard for me to do this. Matt is great, but I'm not sure how much longer he can continue to carry her upstairs. Our bathrooms are not handicap accessible. Of the 2 bathrooms in the house, the 1 most adaptable is upstairs on the second floor. Right now we have no Garage. Naomi cannot walk on ice or snow at all. When winter comes we must carry her to the car.That is not the end of the story. My youngest daughter Deanna was diagnosed at birth with Duchennes also. This multiplies the issues that we face. She is 2 1/2 and in 3 short years the same issues we now face will resurface.If you should know another family who would benifit just as much and feel led to nominate them by all means nominate them. We are blessed by the freindships that we have and are amazed by the support that has been so freely shown us.May God Bless You All.
Nancy and Matthew Harry