Hi Family,
About a year ago we wrote a letter to a family that lives in Utah that has four children with Rigid Spine Muscular Dystrophy. We found out about them through a Research paper we found on the internet. We contacted the researching doctor, and he put us in contact with the family. We finally received a letter from them. It was quite a moving experience, and hearing about their problems, and joys, trials, and love made for a very emotional read. The saddest part was to hear that two of their children died this year. It opened me and Jasmines eyes to the sad situation we are in.
Rigid Spine Muscular Dystrophy is so rare (only 10 cases in all of Australia) and few in the US. This makes it very hard to get correct, current, and specific information about what our kids are going through. I thought this letter would help give you an Idea of what we expect for our kids. For those of you who don't know, Phoenix has a much worse scoliosis than Isis. This means Spinal Surgery sooner in life than expected.
(Nick asked me to un-post the photo and letter...they haven't written back to them yet and it might not be appropriate--so it has been deleted)
Oh Pat, I hear the journey. It is not pretty. I am all too familiar withthe pic-lines, tubes, etc. in loved ones. It is hard on the patients butalso on the caregivers. Those "tender mercies" and miracles. That poor Utah family....So much loss, so much difficulty every whichway. And loss of insurance too? Oh my, why must some suffer so much. The Savior said He would not leave us comfortless...I pray for comfortfor them in the loss of not one, but two precious children. No parentshould ever have to bury a child. How could we stand life if we didn'thave that hope in Christ. And bless your children and grandchildren....and grandma too! Love you,Suz
ReplyDeleteI just finished reading both letters. Wow, such loving and patient families these special children have come into! I admire their strength, devotion and faith for all they are going through!
ReplyDeleteConnie
Dear Pat,
ReplyDeleteI was so touched by the letter from your son Nick. I didn't know about the problems with their children - or I didn't remember. They sound like a marvelous family. Will they be coming to Utah permanently or just for a visit?
Thank you for including me in your letter.
Love, Lois
Pretty amazing what some people go through, and with such love and optimism. So will you have your family with you in your home while they're in Utah? Keep me updated, okay?
ReplyDeleteKay
Pat,
ReplyDeleteThanks so much for passing that on. I don't know if we are including the "families" and all but would like to come down when (I assume) mom and dad are coming down if that's alright.
Mom said you guys had a great time on your cruise!!! Molly and I are so jealous!!! We are trying to plan for a Disney Cruise sometime in the nearish future so are trying to save like crazy!!!
All is well here, for the most part. We are planning to move into a duplex right behind mom and dad. We were over there doing some painting we wanted done and found out that there is almost no water pressure - certainly not enough to even particularly shower!!!!! So I've got to check into that because for me it's a deal breaker - although I've signed the lease and am set to actual start there on April 1.
Molly is doing well and continuing to get good grades.
That's about it for us - nothing too exciting.
It's always good to hear how you and everyone is doing so keep sending the info. Take care!!!!
Jean
that is a real heart wrenching letter,thanks for sending it to me. if i understand correctly your son lives in australia.So this will be special there comming to see you. It looks like it is going to be july rather than march before i make it to salt lake. I would still like to try to at least have lunch toghter. It was good to hear from you again .
ReplyDeleteIt is really nice to read such warm and caring comments from some people that I don't even know. It is hard for me to relate to situations that I don't experience myself, and I always asume others are the same. but I am always proved wrong.
ReplyDeleteThank you everyone for understanding in your own special ways!
Thank you for your beautiful comments.
ReplyDeleteJasmine