+216 votes
Addilyn's Journey of Hope
Description
Addilyn with Krabbe disease.
Complete story Click Here

If you would like to send Addilyn mail, care packages, or donations they can be sent to:

Addilyn's Journey of Hope
PO Box 145
New Sharon, ME
04955
13,216 views Jul 22, 2015
anonymous
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mjlearned 340 points
What a wonderful angel and family to protect her!  Bringing change in state law in Maine, and awareness through social media about this awful disease.
+9 votes
Jul 31, 2015
anonymous
Addilyn and her family are the strongest, most passionate, and most amazing family I have ever seen.  Their strength is unmeasurable. Their love for Addilyn is beyond belief.  Addilyn is such a beautiful little angel, and she is a fighter.  Anyone who follows her story can't help but fall in love with her.  #addilynstrong
+6 votes
Jul 31, 2015
Nikki Parham-Martine 300 points
She's beautiful!! Keeping you in my prayers sweet girl!!
+4 votes
Jul 26, 2015
anonymous
Beautiful little princess!!  Keep up the good work of spreading the word about #krabbesawareness  Prayers for your family!!
+4 votes
Jul 31, 2015
anonymous
In my heart!
#teamaddilyn
LYWANIMAL
A TRULY INCREDIBLE FAMILY.  I HAVE NEVER SEEN SO MUCH LOVE FOR ONE LITTLE GIRL. #ADDILYNLOVE
+4 votes
Jul 31, 2015
Cheryl Taylor 240 points
Love this beautiful  girl #TEAMADDILYN
+2 votes
Jul 31, 2015
anonymous
Love this little girl.  I pray for her and her family daily.  #AddilynStrong
+2 votes
Jul 31, 2015
shannonag99 190 points
Love this girl.  I pray for her and her family daily.  #AddilynStrong
+2 votes
Jul 31, 2015
billieandjoe 220 points
Always praying for all of you.  You are an amazing family. Keep up the great work of awareness.
+2 votes
Jul 31, 2015
anonymous
Sweet baby Addilyn you are such a strong little girl. #teamaddilynstrong
+2 votes
Jul 31, 2015
ABritsWife 190 points
precious baby girl. This family is chosen as her perfect angels to care for her.
+2 votes
Jul 31, 2015
Phxxsunshinekid 200 points
Precious baby girl, awesome family.  Pray for her every day.  The posts from her mom show everyone just how strong she is.  Princess you are an inspiration to all who know and love you and to all those who follow you on Facebook.  You are an angel, you are loved, you are a fighter, a princess and you are Addilynstrong.
+2 votes
Jul 31, 2015
Kim Perkins
Just precious! Praying always for you Addilyn!
+2 votes
Jul 31, 2015
anonymous
Such a fighter!  
+2 votes
Jul 31, 2015
Sonoran~13 180 points
Been praying for this sweet child and her amazing family for a very long time.  Love those baby blues.  Addilyn and her family have not only been doing a great job being as healthy as they can be, they have worked so hard to increase the awareness of this terrible disease and to try and mandate post natal testing.
+2 votes
Jul 31, 2015
anonymous
#teamaddylin always in my thoughts and prayers  <3
+2 votes
Jul 31, 2015
Loretta Grant
love this baby girl...follow her story everyday...#Addilynstrong
+2 votes
Jul 31, 2015
Cheryl
I've been following Addilyn's Journey if Hope for about a year. There are sadly, so many sick children, and every story tugs st your heart. But Addilyn's mother puts her heart out there with her posts. She literally brings you into their family, her thoughts, her heart. The way that she has chosen to deal with watching her little daughter die, is so uplifting, so dignified, and at the same time, so heartbreaking ... I want to hug her, and I am so impressed and in awe of this mother, Addilyn, and her family. They have also worked hard to bring awareness of Krabbe Disease and to add it to the list of newborn blood testing in every state. Addilyn would probably have been saved if they had tested her blood at birth. They sincerely deserve and would appreciate anything that will bring them some moments of peace and comfort together that will become a happy family memory.
+2 votes
Jul 31, 2015
anonymous
I have been following Addilyn on FB for a while, I love this little fighter!!! Prayers sweet girl.
+2 votes
Aug 1, 2015
tbayer 130 points
Prayers for this little girl. Been following her and her family for a long time.
JHartford
I have followed Addilyn's Journey faithfully for over a year now. I am also the mom of a severely disabled daughter as well as a perfectly healthy toddler. I find I am able to identify with a lot of their struggles and admire the strength and passion of this lovely family. God bless little Addilyn!
+1 vote
Jul 31, 2015
anonymous
SHE IS A LITTLE ANGEL  LOVE THIS  SWEET  GIRL SO MUCH
+1 vote
Jul 31, 2015
Stacie2084 240 points
My Addilyn!! Sweet girl. I hope you win. I am so glad that all of my Facebook kiddos are here. Good luck to all of you guys. Love u all
+1 vote
Jul 31, 2015
aripley
This little sweetheart touches us everyday.  She is so strong .  Her family is just amazing. God knew what he was doing when he made her, she teaches us to all be strong.  Keep going sweet angel
+1 vote
Jul 31, 2015
Meshel68 180 points
She has touched so many hearts, Precious baby girl, thanks for sharing this special angel with us all..Team Addilyn all the way :)
+1 vote
Jul 31, 2015
gailgutierre 160 points
I look forward every day to see her beautiful face...Sending prayers for her and her family..Such a beautiful family..
+1 vote
Jul 31, 2015
Wendy
#Addilynstrong love this child and admire her strength and her families.
+1 vote
Jul 31, 2015
Sherry Ann 170 points
I don't know this little Angel personally, but I wait everyday for her updates. I love reading about and watching the miracles that she goes through. She has the most amazing Mom. xo
+1 vote
Jul 31, 2015
Valerie Schomberg
If you have never seen the face of an Angel just look at Addilyns face..so pure so beautiful.Warm energy and blessings to this Angel and her family ***
+1 vote
Jul 31, 2015
Vonnie Redfield 180 points
Addilyn has been such an inspiration of strength!! She is the second krabbe baby we have followed. Dear Hannah bear was the first. This awful disease is taking the lives of these sweet babies and it's breaking my heart!! Let's get more KRABBE awareness out there!!!!! Newborn testing in every state please!!!!
+1 vote
Jul 31, 2015
DeniseStanwood 160 points
Addilynn is very special to me and my family
+1 vote
Jul 31, 2015
Penny S Dunn French 170 points
I search daily for news of Addilyn. She has become a part of our lives as we watch her grow and her family fight hard for her quality of life. They show a strength of faith and love as they invite all of us into their lives. Sharing awareness of Krabbe and what could have been a much different life for Addilyn, if the Krabbe test were a part of the infant blood testing in Maine. They share a link to purchase a blood test for a shower gift for any expectant parent, because the child's life you spare from Krabbe's grip could be your family member.
+1 vote
Jul 31, 2015
llv1
This precious little Addilyn and her family have lived in my heart and prayers for a while now.  I am continually amazed by their strength and faith and honesty.
+1 vote
Jul 31, 2015
anonymous
The faith and strength this family has is truly amazing,,,  <3
+1 vote
Jul 31, 2015
Veronica 450 points
This beautiful warrior family are in my prayers every day. So sad to know that newborn screening could have made the difference. #KnowingIsHalfTheBattle #TestOurBabies #AddilynStrong
+1 vote
Jul 31, 2015
Marie Lagerstrom
This beautiful little girl is a gift from God for a very special, loving, caring and nurturing family.  Addilyn with her families help has taught the world so much about Krabbe.  A disease I had not heard of until I started following her moms post.
+1 vote
Aug 1, 2015
anonymous
Seeing her big beautiful eyes makes my heart so happy. She is the meaning of strength, courage and love. She is teaching a very valuable lesson everyday, that life is too short to sit and complain about, live life to the fullest even on your worst days. We love you Addilyn.  I love reading your mommy's post, even the not so good ones.  They may make me cry but I don't mind, crying reminds me that I am human and that I have compassion for other's, actually feels good sometimes. Will always be sending positive thoughts and BIG hugs your way. Seeing your pics light up my day.  :)
+1 vote
Aug 1, 2015
LauraP
Addilyn is one of the most amazing children and her mama is one incredible lady. Her strength and determination inspires me daily to enjoy even the really hard times we face as parents. Her faith inspires me to be a better person each and every day as well. So much love to this incredible family!
+1 vote
Aug 1, 2015
mbelcher 170 points
The amount of love and care this little angel gets is incredible.  Her mother has a strength and a devotion that are beyond measure, her faith is inspriation.  I get joy from seeing the pictures of her with her little sister, an incredible family.
+1 vote
Aug 1, 2015
Tammy
This little angel is truly a fighter and the strength her mom shows everyday is amazing. You could not ask for a better mom then Jamie ... the love that pours from this family is phenomenal !!! #addilynstrong
+1 vote
Aug 1, 2015
anonymous
I have followed ADDILYN for 2+ years now and she is such a beautiful child with very loving family. I pray for her well being daily. She is amazing! <3 <3 <3
+1 vote
Aug 1, 2015
anonymous
What a special gift from God to a very special family. Addilyn has been in my thoughts in prayers for some time now, along with her baby sister mom & dad. She and her parents have been an inspiration to other families who have little ones who suffer from Krabbe. With this family and the other families fighting to wipe out Krabbe, every state in the USA should test for Krabbe at birth on every child born. There should be no question in the line of government on making it mandatory to do the Krabbe screenings.
+1 vote
Aug 1, 2015
anonymous
She so beautiful!! I had never heard of this until I came across her facebook page. Thank you for bringing awareness to this.
+1 vote
Aug 1, 2015
Nelst 170 points
What a sweet and beautiful little girl..thank you for bringing awareness to this. I had not heard about this until about a year ago
+1 vote
Aug 1, 2015
Lisa
An amazing family...I love following her journey. She is such a beautiful girl. Many blessings to Addilyn and her family!
+1 vote
Aug 1, 2015
cohabipu 590 points
I have been following Addilyn's Journey since she was about 18 months old. I have attended events in her honor. She is such a sweet little Princess and a warrior like non I have ever met. her parents, Jamie & Kyle are very loving parents and baby sister Rilyn is such ball of energy! The prayer chain for Addilyn and her family has grown and continues too with so much love from all corners of the world. God has plans for each of us but thanks to Him listening to all of our prayers and witnessing the strength this little lady has to beat the odds, he has blessed her with daily miracles of life. He has definitely taken notice to the rallying beam of fight Addilyn displays wholeheartedly. I think if God can be wrapped around a little finger and smitten with love, pride and awe from a tiny warrior proving her faith, loyalty and devoting to Him...as well as her drive for life, Addilyn's finger it would be. #bravestprincessonearth
0 votes
Aug 1, 2015
Luvmybabies 150 points
You have my vote,love and prayers....Beautiful Girl!
0 votes
Aug 1, 2015
Kathy ThomasModessto 150 points
Addilyn is so strong! Her Mommy shares her days and what it's like to raise a little girl with Krabbes disease. Some days the posts make me smile, like her petting a horse. Other days I cry when Addilyn has had a bad day and her Mommy is tired and discouraged. Her Mom has a strong Faith and knows the Lord holds their days in His hands. Prayers are said every day for this amazing family that I have come to love.
0 votes
Aug 1, 2015
Helene Bryant Domi 150 points
Addilyn has captured my heart. Her mother is a source of strength through her love of God and faithfulness. Their fight to prevent Krabbe through a blood test at birth is inspiring and should bring everyone to help them, no matter what state you live in. #addilynstrong
0 votes
Aug 1, 2015
Barb Baker
I just love this sweet beautiful girl and her family. Have been following her for a long time. My thoughts and prayers are always with them. Krabbe disease is so sad and a blood test at birth could stop this horrible disease all states should test for this you are testing for other diseases it should be made mandatory,For all families wherever they live in the USA and other countries.We need to fight for this.Love ,thoughts and prayers for all Krabbe Families.
  
.
0 votes
Aug 2, 2015
Scarlett Roberson Me 140 points
As a survivor of the most rare form of Krabbe Disease, Adult Onset Krabbe Disease, I know both Princess Addilyn and the horrific symptoms that she continues to suffer from.
In a short summary of my story, I was a healthy sixteen year old when I began to experience difficulty walking. After many tests, I was finally correctly diagnosed a year after my problems began. In 1996, my family and I were informed that I had a fatal disorder known as Krabbe Disease. Another year went by with my family and I continuing to be told by specialists there was not anything that could be done to help me. My outlook for the future was filled with images of my body slowly shutting down and myself being in a vegetative state. I was given five to ten years of living with those events. Although an early death remained to be the prediction for me, the faith of my family and I never grew weak. In fact, our belief in a miracle became very strong. After many, many prayers had been lifted, my mother received a phone call from my neurologist asking us to come into his office as early as we as possible. My miracle began on the day my neurologist delivered the news that a possible life-saving treatment for me had been discovered. I was eighteen years old when I underwent the bone marrow transplant that successfully stopped the progression of Krabbe Disease and saved my life.
Today, at the age of thirty-six, I am continuing to dedicate my time doing what I believe is my purpose in life. I am speaking for the children who do not have a voice, like Princess Addilyn. Just as a treatment was discovered to save my life, the same, a Cord Blood Transplant, has been proven to be successful for children who are sick with the most common and most severe form of the disease, Early Infantile Krabbe Disease. However, children must be diagnosed before the disease is too far progressed. Due to symptoms of the Early Infantile form of Krabbe Disease rapidly progressng, it is IMPERATIVE for infants to be tested for the disease at birth through Newborn Screening. Each state can make this happen by adding Krabbe Disease to their Newborn Screening Panel. Unfortunately, at this time, even with the treatment having been available and proving to be successful since 2002, only two states, New York and Missouri, screen newborns for Krabbe Disease. As time is continuing to quickly pass and many children are being denied their chance of being treated for Krabbe Disease, affected families in nine states, including the family of Princess Addilyn in Maine, continue to try to get Legislation passed to have Krabbe Disease added to their state's Newborn Screening List. Had Krabbe Disease been screened for at birth in Maine, Princess Addilyn could have been saved from three years, and ongoing, of horrific suffering and have been given her chance to a healthy, happy life.
I am speaking for Princess Addilyn when I ask you to vote for her to appear on the Ellen Degeneres Show and allow her to continue fulfilling her life's purpose to spread awareness of Krabbe Disease and the chance to save other children's lives. Thank you.
Scarlett
0 votes
Aug 3, 2015
susie
I love this babygirl such beautiful blue eyes praying Jesus heals her from this sickness .She has a beautiful family .God Bless All ♥♥♥♥♥♥♥♥
0 votes
Aug 3, 2015
Jessica Schaefer 220 points
Addilyn has been fighting hr battle for a long time. I love her big blue eyes and her facial expressions. Hugs to her and her family
0 votes
Aug 3, 2015
Linda
What an amazing mother and father this beautiful baby has.   They are constantly finding ways to comfort this angel. Trying to balance a life for the family is always first on their minds. They want to see that  Addilyn experiences everything possible. Jamie Davis is trying to bring awareness to this disease which was literally unknown to most.
0 votes
Aug 5, 2015
anonymous
Addilyn passed away this morning. (10-21-15) we are all devastated. Hearts everywhere are breaking for the Davis family. Thoughts and prayers full of love peace and strength are surrounding this grieving little family. Addilyn Sophia Davis, may you forever rest in peace. Pain free and running and singing in our Lords beautiful kingdom.
0 votes
Oct 22, 2015