Hi, I thought i was only one of two mothers of twins with morquio syndrome….seems you are the third! I read some of your blog and It sounds like you are in a rough place with so many demands… As I am too right now. The boys are a year and a half and were diagnosed three months ago and are due to have spines fused in the following year…i didnt know it was so complicated and risky…. thankyou for writing your blog. I hope you can maybe add me to facebook…. I would like to stay in touch maybe?
Kep your head up you guys. You can make it through this.You are always in my prayers.
I am a friend of your Grandma Janets. I have tried to keep up with the progress and updates regularly. You boys, your Mom, Dad, And Grandparents ALL have been in my prayers dailey. I pray for you each day to have a better day ahead, an easy nights rest and a bright beautiful future to come. You boys are truely Heavens Lil’ Angels… I have come to love you all through your Grandma Janet’s stories and tales of Joy that she has shared with me. My prayers and support will continue. I am here, Grandma Janet has my info.
With My Deepest Love and Friendship, O.C
I see they love the walker! I can only imagine the trouble they cause pushing eachother around and into the walls. It is wonderful to see them walking.
Also, saw Alison, Jack, and Hunter in the Union Leader article. You have a beautiful and wonderful family. Our thoughts and prayers are with you.
I went to high school with grandmother Janet……so sorry to learn about your beautiful boys disease…I DO believe in prayer…and have added Jack, Hunter and all of you to my daily list…..thanks for opening up & sharing with us. Valerie Elliott Lewis mother of 4 and grandmother of 5….live in Vermont
I am so happy that Jack and Hunter are doing so well, you guys are in our thougths and prayers.
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