Mary Ann, this is wonderful. I love you all very much. Aunt Berta
I love you and am praying for all of you; so are many others. Love Aunt Pam
I found you by complete accident on twitter. I was looking for someone and you were one of their followers and, well, you know how trails go – eventually I ended up here. I just want to tell you that you and your childern, especially Faith, are in my thoughts and prayers. I can tell you honestly I do not know (as most don’t) what you are going through, but I do know what I see from the words of your journal – a strong woman who loves her family and will do anything and tolerate anyone to keep them safe, healthy and happy. I also see a woman who sometimes struggles (albeit with much grace) with the everyday stress and ‘new’ normailty of life. You have an inner strength that can move mountains – and an even stronger…”Faith”. God bless you, my friend.
Mary Ann, I want to say SO many things. All of it will have to wait,though I can barely type coz I’ve been crying. We need to chat. IF you are uncomfortable,I’ll understand. REGARDLESS, I’d like to know if your current doctors are trying to get Faith matched with more doctors &/or a different treatment center…? Please let me know. I thought I saw a tweet where mentioned doc’s in China….is that being seriously considered? I KNOW you have an awesome support system & you don’t REALLY know me. BUT, I think I can help you guys. More later. PLEASE let me help. (my brother has NO kidneys,dialysis 3 days a week. At 1 @ime he was hooked up to dialysis 24/7,had feeding tube, colon tube & a traech ALL AT THE SAME) TIME). please respond when you have a moment. thans! Debbie
Mary Ann, Will, and Faith,
I think of you so often and wonder how you are all doing. I admire your courage and strength to start this blog-what a great idea to let others know of your struggles and triumps. I wish I had something wonderfully clever to say to ease your pain, but I can tell you this- I believe in miracles.
And sometimes I think it takes blind faith to make a difference. I’m certain the fact that you named your daughter Faith was not by coincidence. You may not know now why this is her journey or struggle, but I have no doubt her life serves an important purpose. She is an incredible little girl who is wise beyond her years. Anyone who meets her will certainly not forget her. Perhaps it is her struggle thay will move a doctor so much a new remedy or cure is discovered. Faith has an uncanny way of leaving an impression on anyone she meets. I believe it is just a matter of time before she will be cured, but for now I’m keeping the faith. Love, Christy
Just thinking of you and your beautiful daughter. Please let us know how things are going.
I read your article in The Courant, I was touched. I am a mother of 3 in Brighton. It mentioned some fundraisers that we benefiting Faith. I’d like more info to pass on to my family and friends. I can’t imagine what you go through as a mother and the courage of your daughter is truly amazing. It seems like so little to offer, but if you can e-mail me the benefit info I will share with as many as possible. God Bless You and Your Children
You are in my thoughts daily. I’m the lady your Mom gets the eggs from. Last I heard from Barb was Faith was back in the hospital, that’s been a couple of weeks I think. Praying for all of you.
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Praying for a full recovery!!
You are a very courageous, brave girl. I love you and Jesus loves you too. He will take care of you.
Hang on to the hand of God and he will lead you through and out of this dark hour.
May God Bless, Keep & Carry each of you during this time of uncertainty. I will pray for complete healing for your daughter, strength for your family and for a cure. K
Have you seen this?
4. Children’s Hospital of Wisconsin, Milwaukee
For her entire life, 6-year-old Lillian Yuska has been in and out of the hospital with gastrointestinal problems. “She was treated at many well-known facilities, examined by numerous specialists, has had countless tests and procedures,” says her mom, Danielle. “We have been blessed in that many serious medical conditions were ruled out, yet it was frustrating not to have an answer.” When Lillian came to Children’s Hospital of Wisconsin two years ago, she had a new test to look at all of her genes. Doctors here had been the first in the nation to sequence the entire genome of kids with unexplained illnesses. They hunt for mutations in every gene and try to match their findings to a known condition. “We were practically dancing in the hallway when we discovered what was wrong with Lillian,” says David Bick, M.D., medical director of Genetics. The diagnosis: tricho-hepato-enteric syndrome, a rare inherited bowel disorder. Although there isn’t a treatment yet, doctors will monitor her for liver problems and heart disease, complications associated with the condition. “We are also in the process of joining an international registry to find out more about other children who have the same condition,” says Danielle.
I came upon your site today and just had to tell you that you and your daughter are truly inspirational. Your story touched my heart. My daughter was born with a rare abdominal birth defect where she was born with some of her organs on the outside of her body. We were scared to death about how our daughters life would be but by some miracle 8 months and two surgeries later she might not have a ‘belly button’ but it is still the most beautiful tummy to me. Your daughter is beautiful inside and out, what a special little girl. Spreading so much hope and love for the rest of the world.
My name is Jackie and I’m the president of a non-profit called Girls With Guts. We aim to support women and children with IBD. We LOVE Faith and her story! We’d like to invite you to check out of blog and submit a story written by you or Faith! Our submitted stories focus on times of triumph or encouragement despite living with IBD or an ostomy! We hope to hear from you soon!
Has anyone ever mentioned intestinal transplant? I currently work as an intestinal transplant coordinator at the Miami transplant institute at Jackson memorial hospital in Miami, fl. We have a great program!
Mary Ann, a friend sent me the link to Persnickity Clothing Company that featured Faith. I was diagnosed with colorectal cancer in October & had to have a colostomy. I’ve tried to have a positive attitude & trust God, to be an encouragement & inspiration to others…but that colostomy bag is my biggest downfall. Faith’s story & her attitude have really touched me. If your sweet little girl can have such a positive attitude, such faith in God, & strength to go through her illness, who am I to complain? Such an inspiration! Will add Faith & your family to my prayer list. God bless & keep you all!
A friend of mine sent me the link to your blog with the thought that I may find some strength from it. I too am a single mom of a medically fragile child. My second one. My first one, Kennedi, passed away at 1 1/2. And my Harlem, now 3 months old, has spent all but 16 days of his life in the hospital. Your journey with Faith inspires me, and helped to remind me that I am not alone on this path. THANK YOU! I will keep your family in my thoughts and prayers. If you’re interested, you can read about my journey with Harlem, and Kennedi, at the38day.wordpress.com
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