Thank you so much for your ongoing prayers and support. Justin has been really struggling through these weeks and trying to carry the burden of this on his own. Last night, Justin laided our children at God’s feet and God’s peace settled on our hearts last night. I think that is why we had to wait for the results. God is STILL and always will be good. We don’t understand why the results are a part of his will for our family, but we are going to rise above this and love our kids in ways we never could have imagined. We want people to see God’s mighty hand in this. He never promised an easy road here on earth, but he promised he would be with us through this. If we keep an eternal perspective, not a worldly one, we already see this as a blessing. Obviously this is not the future we imagined, but our kids are already showing people the mighty kingdom they will be a part of. All that to say…
Both Brooklyn and Jayden have MPS IIIA / Sanfilippo Sydrome. Sanfilippo Syndrome is a recessive autosomal genetic disease. Children with Sanfilippo Syndrome are missing an essential enzyme needed to breakdown and dispose of long sugar chains in the body called mucopolysaccharides. also known as GAGs. Because these sugar chains cannot be broken down and disposed of they accumulate in the cells causing progressive damage. Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies.
On Tuesday, we will be hearing from the expert at Children’s and possibly begin a newer drug, genase (I think) that acts a a barrier to the build up. We will meet with them hopfully next week so I have more answers as to our next steps but we feel we are in good hands.
We want our children to live as “normal” as possible. We appreciate you just loving them like you did 3 weeks ago, before we knew this. Would you help us celebrate their lives now? Celebrate with us making memories with our children. Love on our kids. Let’s all not be sad now, we can be sad later. I want to play with my kids, enjoy their smiles, kiss on them, run after them, hold them, and be the best mom I can be. That is my promise to them.
We love you guys…please don’t stop praying. This is just the start to our journey. We need prayers for a treatment and cure, for our marriage to be strengthened, for our patience to superseed natural abilities, pray for sleep, pray for smiles, pray satan never gets a foothold in our home. Pray God always remains at the center of our hearts giving us the strength and grace we need in every moment!
PS…We are going to start by celebrating. On Saturday, October 31, at 6 pm, we are going to host a halloween party in honor of Jayden’s 3rd birthday. We were unable to have a party this summer because we had Brooklyn and for the last two years, we have hosted a halloween party. So, in keeping with tradition, and now my need to celebrate each birthday, we are having a party! It will be a costume party, and the theme is in honor of Jayden’s love for Bob the Builder, Handy Manny, (and Bubba and Daddy) so come dressed as a handy (wo)man! Overalls, flannels, tool belts, hard hats, etc. In leiu of gifts, Jayden is swimming in toys, please bring a dish to pass. We will provide punch, coffee, etc. Also, if you can’t stand the idea of not bringing a gift…please consider helping us finance our trip to Disney this December. We are going down for the national MPS conference and spending a few extra days at Disney around Dec 15-21.
Kids are welcome and can wear their halloween costume too! We can bob for apples and play some games. Maybe even a tractor ride! For those of you who attended in the past, the only character I will be playing is a mom madly in love with her kids.