I wish, I wish I could take it all away from my little girl. This horrible disease that will cause her muscles to waste away until it takes her life. I know that there is a reason for everything.. Why does life have to be so painful? Amidst the pain we live of course. We laugh and be silly. we Do not rain on our daughter's parade. But when she is not watching we look at her and we see an "Earth Angel" - a little girl who demands no attention. Our hearts are breaking every more each day. We see signs of more weakness in her :( God will call all of us home at some point we know. We just want to hold on.. to protect her from the pain and hurting of this disease! Oh how I ache for her. I love you so much Nicole! So, So much!!

Duchenne muscular dystrophy (DMD)

Main article: Duchenne muscular dystrophy

Duchenne muscular dystrophy (DMD) is the most common childhood form of muscular dystrophy. DMD usually becomes clinically evident when a child begins walking. Patients typically require a wheelchair by age 10 to 12 and die in their late teens or early 20s. In the early 1990s, researchers identified the gene for the protein dystrophin which, when absent, causes DMD. The dystrophin gene is the largest known gene in humans. Since the gene is on the X-chromosome, this disorder affects primarily males. Females who are carriers have milder symptoms. Sporadic mutations in this gene occur frequently, accounting for a third of cases. The remianing two-thirds of cases are inherited in a recessive pattern. age at onset: two to six years; symptoms include general muscle weakness and wasting; affects pelvis, upper arms, and upper legs; eventually involves all voluntary muscles; survival beyond 20 years is rare.[4]

Dystrophin is part of a complex structure involving several other protein components. The "dystrophin-glycoprotein complex" helps anchor the structural skeleton within the muscle cells, through the outer membrane of each cell, to the tissue framework that surrounds each cell. Due to defects in this assembly, contraction of the muscle leads to disruption of the outer membrane of the muscle cells and eventual weakening and wasting of the muscle.[4]

Brooke Lynne so sweet! Such an industrious and hard worker in life. Very talented at so many things!! She is a beauty in and out!

Riley you are a sweetheart through and through. Very dramatic you hold us in suspense at what you will do next..Love mama

A note on Nicole's update.

Dear Family and Friend,

Wes and I have recently had meetings at our school with a whole crew of people that will help Nicole along with her muscular dystrophy. This will be implemented this year. It was a great meeting with people who care and want the best for her. It has been so hard lately as we see the disease definitely progressing – faster than what we hoped. She is exhausted most days and has slept from about 4pm until 7am the next day, waking up only to go to the bathroom and have a drink.



With this meeting the physiotherapist and occupational therapist came to our home to assess it. Knowing that we are still in the process of renovation an old home they wanted to see what we could do to make it wheelchair assessable. It is a cozy home that has taken some time to finish as Wes enjoys doing it and we live in the process of it all. Everyone loves it here! It does not seem possible to make the lifts and possibly a outdoor type lift. There needs to be a way to move the wheelchair around in a complete circle and be able to get into the house. Being that we have a huge back yard it would be possible to add on etc. God knew this appointment in our life would come up with Nicole and I firmly believe in my heart that, that is why we have not finished renos. There are all sorts of funding for lifts etc. for our home that we have just learned about.



I ask in faith that God will direct us to know if this is the home in which we should finish to accommodate this new way of living or he will show us a home in which it has been already been done or even that we would be able to build one. We have a huge enough lot that we could do that here without having to move. This downtown living is specifically good for Nicole as she has the pool, library and things to do as they are so close.



We believe God has intended us to ask in prayer what we shall do and we have been so thankful for our family, friends and church rallying around us in support and love. We have never been so loved in a before We have been grieving so much lately and as we notice the changes in Nicole it has not been easy. God is the God of impossibility and we pray and believe so much; however it still is hard. L



We ask for prayer and guidance as we go through this process from the bottom of our hearts.



Blessings,



Wes and Alanna Drews