Reesa's Story


On July 30, 2011, after a generally normal pregnancy, we welcomed our beautiful Baby Reesa into the world. It was the happiest day of our lives!  Reesa was delivered via emergency c-section because her heart rate was dropping during labor, which is a common occurrence during child birth.  Reesa was 7lbs 13oz, 21 ½ inches long and had an APGAR score of 9.  It was such a joyous occasion as Reesa is our first child and the first grandchild on both sides.
 


The first 6 months of Reesa’s life were completely normal. She was breastfed and was a terrific eater.  Her height and weight were always in the 80th percentile range for her age.  She was also sleeping through the night by 6 ½ weeks.  We introduced solid foods at 5 ½ months and it was so much fun to watch her squeal with excitement in her highchair.  Then at 6 ½ months we started to notice some changes.
 
We took Reesa to the pediatrician because of a typical stomach sickness. While there we mentioned that Reesa seemed to be a bit behind on some of her milestones (specifically grasping and rolling over), she also had some stiffness in her limbs and clenched her fists more than other babies her age.  We knew that every baby develops at different rates so the concerns weren’t terribly alarming.  However when the doctor measured Reesa’s head he noticed an unusually large jump in size from her 6 month appointment.  Out of an abundance of caution he asked that we check into the hospital for an MRI to rule out Hydrocephalus (fluid in the brain) which can be common in infants. The pediatrician said he would have a neurologist examine Reesa while in the hospital to address the developmental delays that we had mentioned.  Our main concern was Hydrocephalus the neuro exam was more of secondary concern. The MRI came back negative and it turned out that Reesa just has a big noggin (thanks to her dad and grandpas!).  However the neuro exam was much more distressing.  After a 20 minute clinical exam the pediatric neurologist told us that he feared Reesa had a Leukodystrophy, a group of rare genetic disorders that affect the white matter in the brain.  He said he would need to do blood tests to confirm or rule out, and the results wouldn’t be back for over a month.  After researching Leukodystrophy in the hospital it hit us that our baby might be very sick with an extremely rare and grim disease. We were horrified. However this was not a diagnosis, it was simply the doctor’s opinion after playing with Reesa for 20 minutes.  After going home and regaining our composure, we were hopeful that the blood tests would come back negative.  The odds were in our favor as this disease is extremely rare.
 
The next 5 weeks were unbelievably difficult, not only anticipating the test results, but Reesa also started to exhibit some worrying changes.  Reesa began having feeding difficulties and starting losing a significant amount of weight.  Our pediatrician admitted her to Phoenix Children’s Hospital.  After 6 grueling days of tests, IVs, X-rays, swallow studies, an endoscopy, colonoscopy, and lots of poking and prodding we were released from the hospital with no answers but Reesa was now on an NG feeding tube to supplement her bottle feeding.  We still had lots of hope that this was just a bump in the road but in the back of our minds we had a sinking feeling.  The next couple of weeks were absolute torture.  Reesa became extremely irritable and at times inconsolable.  She would cry for hours to the point that her clothes would be soaked with sweat. She would hardly sleep.  It was hell and we would have never have been able to get through it had not been for our new, live-in nurse (Grammy Flo).  We, and all of our friends and family, prayed day and night that all of the test results would come back negative.
 
On April 2nd, 2012 we received the phone call from our neurologist, the test results were back and Reesa was diagnosed with Krabbe Leukodystrophy, an extremely rare genetic disorder with no cure and generally fatal before 2 years old.  Our beautiful baby girl is dying. There are no words to express the shock and devastation that we are feeling.
 
We’ve been overwhelmed with an outpouring of support from friends and family.  The purpose of this website is to keep all of those who love Baby Reesa informed about her status and the ability to share in her life.  Please come back often and share your feelings and comments.  Knowing that we are not in this alone gives us the strength to get through this challenging time.
 
As dire as Reesa’s situation may seem, we are committed to making the most of every moment we have with her.  Every day is a blessing. Our love for each other and for her will carry us through.  

48 comments:

  1. Sean and Jamie
    The words in this poem will be our prayer for Reesa. As new Grandparents for the first time this month, our hearts have been torn in two opposite directions. Sean, our love is with you and we pray that you and Jamie remain strong.
    Nick & Stacey Orlandos

    Gifts Of Heaven


    Lord you see this precious child
    And you care so much for her
    For she is special to you Lord
    And are the gifts of heaven

    Lord you long to soothe her pain
    And calm her anxious fears
    You hold her in your loving arms
    And you show that you care

    You know what she is going through
    You see the hurt inside
    We pray that you will strengthen her
    To endure what’s in their lives

    So she will know the love of God
    And know your saving grace
    To know that you will be her friend
    Through whatever she may face

    So bless Reesa we ask of Thee
    With hope, love and peace
    Let Reesa feel your presence Lord
    And let her fretting cease.

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    1. Stacey and Nick
      This is wonderful
      Mike
      God Bless your 1st and Beautiful Grand Daughter Kaelyn

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  2. WOW, I am a mother of a little boy almost the same age as Reesa. I do not know you both, however I was linked to your webpage from friends of mine and yours, Rob and Samantha. Your story is incredibly touching, and brings me to tears. This webpage is incredible and brings life baby Reesa's story. My thoughts and prayers are with baby Reesa and you both. - Jessica

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  3. Hi,
    Welcome to the Krabbe family. I know it's not a family that people WANT to be in...but once you realize you're in it - it can be an incredible source of love and support.

    My daughter Anaya lived with Krabbe until 26.5 months. She died in November. She had a beautiful life with us that was very meaningful and full of purpose. I kept a blog about her life, her symptom and pain management etc. You may want to check it out. www.healinganaya.blogspot.com I still write about her.

    We also started a non profit society to help children with Krabbe. It is called Anaya's Angels. So far I have personally been to Italy and Mexico to help to beautiful babies with Krabbe. Ginevra and Gabriel. They both have facebook pages and fundraising sites that I helped to set up. You can learn more on our FB page. www.facebook.com/anayasangels

    If you have any questions that I can answer for you I am always available. Us krabbe parents know more than the doctors do. I'm not kidding. I'd love to introduce you to all the wonderful members of our Krabbe Family. Please visit us at https://www.facebook.com/groups/37091720993/ (krabbe families FB group)

    You can reach me by phone 778.997.0593 (Vancouver Canada) or by email camara@fundrazr.com

    I also coordinate online fundraising if you'd like help with that. I am the Community Manager at FundRazr. www.fundrazr.com

    Lots of love to you guys. Everything will be alright. Love will prevail. -

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  4. You and your family are in my thoughts and prayers. My best friend just lost her 5 month old in February to Spinal Muscular Atrophy. I pray for strength for you and many wonderful days with your angel.

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  5. I do not know you - I too was linked to your page through a friend. Your story touched me tremendously and I immediately sent up a prayer for you. I will be praying for you daily -I know that Gods hands will be on little angel baby Reesa and on the two of you. My oldest daughter has just found out she is expecting our first grandchild - we pray for her and for her unborn child every moment of every day and your sweet family will be included in our thoughts as well. Much love.

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  6. We are friends and neighbor's of your cousin Denise. Please know that my wife and I will keep your family in our prayers. We have a child who faced a life-threatening illness and while she is well now, we understand there is nothing as parents that you would not do to help your little girl. The Lord bless you and keep you.

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    1. May God protect all of his angels. We willkeep you in our prayers.

      Flo...Denise's cousin

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  7. I saw the link to your website through some celebs that posted it through twitter. I have an almost 2 year old boy and I could not imagine how difficult this must be for you. It is so heartbreaking reading what you wrote and knowing there is nothing you can do to help her :(. I will be praying for you, your baby girl and your family. God Bless...
    ~Amanda

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  8. Sean & Jamie, you are in my thoughts and prayers. I have found the song "Life will go on" by Chris Isaak to be comforting.

    Ben Schulte

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  9. Jamie& Sean ,
    I am so out of words after reading this... You are amazingly strong to be able to step back smile and really cherish what is important- your baby girl. With all my love and prayers to you and your family Jamie - If you ever need anything I am here..I mean it . I still can't believe it I am so crushed.....

    This is a beautiful site..

    Pamela Larsen

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  10. Hi Sean and Jamie,
    It's your neighbor Mel. I had written a few weeks back to you yet my message never got published so I'm trying again. I know how much you both spend all your time at the hospital with your lovely baby Reesa so I wanted to ask you if there is anything I can do for you? Can I take your doggy out for a walk or bring him over to play w/my boys? I'm happy to do anything I can so please just ask! I am so blessed to still have my boy Wrangler (my older dog) who is a miracle survivor from a terminal disease that he was diagnosed with over a year ago. Stay strong, believe that GOD will provide for you and Reesa in ways you can't imagine and never give up. I pray for you all and know that your adorable little Reesa is so very loved! Melissa (mel)

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  11. Reesa is a beautiful girl and you are a beautiful family. I was told of Reesa's story through a friend at US Airways. God
    Bless Reesa and the whole family!

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  12. Sean & Jamie,
    I hheard of your web site through the St. Louis Cardinals Broadcasters. We lost a grandaughter who was not quite 6 months old through a tragic accident. We will keep Baby Reesa in our prayers.

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  13. I'm going to say prayers tonight

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  14. I came across your page on FB, WOW. You are so strong...and your family is so beautiful. My heart hurts for you.

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  15. Hello, I don't know you but wish I did! I am amazed at the strength you show in dealing with this horrific disease. I bawled my eyes out when reading Reesa's story at work and immediately shared it with everyone I know. The power of prayer can do amazing things and I will continue to pray for your family, as well as for researchers to find a cure for this disease. Thank you for sharing your story and please give love & kisses to your beautiful Reesa!

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  16. Hi, I just saw sean's comment in naturallythriftymom video on youtube, and it broke my heart and I had to come to this site and "meet" baby Reesa. I actually have a son who is 1 day older than Reesa. So your story really hit hard, I can only imagine what you're going through, and it truly breaks my heart. I really admire your strenght through all of this. You have a beautiful little girl and may God Bless her in every way possible. I will definitely keep her and your family in my prayers.

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  17. Jamie- Nichole told me about your sweet baby girl's story and passed along this site! Reesa is so precious, and I am keeping you all in my prayers. I am so amazed by your strength, Reesa is a lucky girl to have such an amazing family! You are in my thoughts!
    Blessings and Hugs,
    Beth Gustafson (from college)

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  18. God bless you all.

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  19. The Cardinals broadcasters just showed the flyer on air about the benefit being held for your beautiful Reesa, but I was not able to get all the information except the date being July 19th. Do you have more details or the flyer online anywhere for this event?? Thanks in advance!

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    1. Thanks for your support. Visit the link below for details, and scroll down a bit:

      http://www.sunrisefamily.org/page_to_print.cfm?id=133

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  20. I am a cardinal fan and i heard about your Baby on Fox sports midwest. I am so sorry for what you are going through with your baby reesa, she is a beautiful little girl. God bless you and your family.

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  21. I too was introduced to your website thru the St Louis Cardinals. I am so impressed at the thoughtfulness and prayers from people you don't even know. Isn't it amazing? My prayers are with you also. I too have a son who is now 10 yrs old but was diagnosed with a very rare genetic syndrome at the age of 3. Cardiofaciocutaneous syndrome (CFC). My prayers are with you daily for your strength during this time. You are a wonderful advocate for your daughter and others.
    God Bless..
    Michelle Johnson

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  22. Just heard about baby Reesa on the Cardinal game. I, too, have a little girl who has been very sick w/ seizures in her 6 year old life and receives her feeding through a g-tube. We spent a good part of 2010 in and out of hospitals. My little girl is sending hugs and kisses to your Baby Reesa. My God Bless all of you and please know that she is, and will always be. your angel!

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  23. We will be praying for you all. We have a son who had infant botulism at 3 months old. It took over 2 monthss to get the test results to confirm that was what it wa and in the mean time he went through many of the same test Reesa had to endure. It was frightening and not knowing was agonizing but in the end God took care of him. He just turned 3 and is doing well now. I know that God is looking after your baby girl as well. You all are in our prayers.

    Inspiration:
    1 Corinthians 10:13
    2 Corinthians 4:8-9, 17-18

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  24. "I'll lend you for a little time a child of mine," he said "For you to love the while she lives and mourn for when she's dead." "It may be six or seven years, or twenty two or three, But will you, till I call her back take care of her for me?" "She'll bring her charm to gladden you, and shall her stay be brief, You'll have her lovely memories as solace for your grief." "I cannot promise she will stay, since all from earth return, But there are lessons taught down there I want this child to learn." "I've looked the wide world over in my search for teachers true, and from the throng that crowds life's lanes, I have selected you." "Now will you give her all your love, nor think the labor vain, Nor hate me when I come to call to take her back again?" "I fancied that I heard them say, 'Dear Lord, Thy will be done' For all the joy Thy child will bring the risk of grief will run. We'll shelter her with tenderness, we'll love her while we may, And for the happiness we've known forever grateful stay. But shall the angels call for her much sooner than we've planned, We'll brave the bitter grief that comes and try to understand." God Bless

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  25. Dear Sean, Jamie, and baby Reesa, This mother and grandmother in Peoria, IL learned of your plight during a broadcast of a Cardinal's game recently. Tonight was the first time I heard of the website and decided to check it out. Keep on doing what you're doing for your darling daughter and your own well-being. Remember how blessed you are to have received such an angel. Cherish each moment, for all of life is a gift from a loving God, who alone can answer why you were chosen to bear this burden. Sharing your story so openly will help others, and also bring abundant support both now and later. My daily prayers are with you. I hope you are carried through on wings of love. God is blessing you each moment, no matter how difficult.

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  26. God Bless Baby Reesa & your family, thoughts & prayers from Cardinal Nation & beyond, Springfield, Mo.

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  27. Looking forward to meeting you Sean at the Stars 4 Baby Reesa event on July 19. It's shaping up to be a wonderful event. Troy

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  28. I am so sorry about your Baby Reesa. I heard about her watching a Cardinal game. Prayers are powerful and I will be saying them for you and your family. I wish you the best. Stay positive you just never know what might happen.

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  29. I teach Children's Church,and we are learning compassion, among other things. We will pray for your little Reesa, and I will keep them informed of her battle. Just remember...
    "When someone you love becomes a memory, that memory becomes a treasure." I have many treasures in Heaven. My prayers are with you and little Reesa.

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  30. You know that we have a great God who still do miracles. Even with the diagnosis never stop beliving. I have a 14 year old daughter with cerebral palsy and a 5 years old son with autism. And at the beggining of this year I was diagnosed with breast cancer and at this moment I am undergoing chemotherapy. But that does not stop me to have joy praice the Lord and belive that through his son Jesus we are healed and whole.

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  31. I heard about your website from the Cardinal broadcast. I am so very sorry for what you are going through. No loving mom and dad should have to go through what you are going through but God is a loving God and only He has the answer. I am praying for your family to have peace and comfort during your difficult time.

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  33. I heard about this through the Cardinal's website. The anxiety and uncertainty must be daily torture. I cannot even begin to comprehend what you and your family are going through. I hope for peace for your family. Blessings to all and especially that little Angel. She is so blessed. Our family recently lost a longtime family friend (member). One of the grand-kids made a comment to us that really gave us some peace.... "Well you know Grandpa... Even God wants him!!!"

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  34. I also heard about Baby Reesa during a St. Louis Cardinals broadcast. Best of luck with the upcoming fundraiser; I'm sure that you will see just how generous Cardinal Nation can be. I am the grandmother of two beautiful boys, 3 years and 6 months. My thoughts and prayers are with your family, Baby Reesa is beautiful. God Bless you all....

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  35. You guys are in my thoughts. I have a two year old daughter and I cannot imagine how hard it would be to know that I was going to lose her. Reesa is such a beautiful precious girl. I heard about her on the Cardinals broadcast and will be donating to her fundraiser.

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  36. I am also touched by your story. Your daughter is so adorable! Continue to cherish every day. You will be in my thoughts and prayers. St. Louis is filled with beautiful people who truly love and care about others. May God continue to bless you and your families.

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  37. I just saw the event in O'Fallon is tomorrow and shared the link on fb. Our 11 year son Ryan was just diagnosed last month with Adrenaleukodystrophy. Its hard enough when they are older to tell you what's wrong or they're scared. Can't imagine a diagnosis when its a little one like yours. Our thought and prayers go out to you and anyone battling any leukodystrophy.

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  38. My son Stevie just attends the Cardinals fundraiser at Sunrise Methodist Church. What a wonderful outpouring of staff, families, ball fan, and players, all for your baby girl. God bless and a huge thank you to all of the players for their smiles and positive attitudes! After reading your story.... May God keep you, and bless you.

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  39. Horrible things in life can sometimes cause couples to blame each other and end in divorce. Make sure you both get good help. Turn to eachother, not away. Don't have two issues.

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  40. Jamie, Sean and Reesa,
    I want you to know, we think of your family every day my husband and I make it a point to pray for all of you every night, when we lay our baby down for sleep. I know that God is wathcing over you every single day. Thank you for showing us lessons of love, compassion, strength and never to take a single breath for granite. We love your family very much and we will continue to pray and keep you all very close to our hearts. I admire your strength. God Bless

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  41. God Bless your beautiful princess Reesa!!!! My prayers go out to your family. I just found out that my only baby niece have this disease and my brother is broken this is really hard for the family. Your story of your beautiful princess Reesa got to my heart God bless you all!!!

    Love,
    Cindy Perez

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  42. Jamie, it has been a long time since we shared the old Fellars cul-de-sac, when you, me and my brothers where having fun as kids. My mom just sent me your web-site and my heart sank as I read about Ressa. My thoughts and prayers go out to you and your family. The love and strength you all have for each other is all the difference in the world. Please know that even though we are in North Carolina we will support you and your family as much as we can, so please reach out if you need anything. Love The Johnsons

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  43. Hi Sean and Jamie,

    Although I don't know you, I just read your story in the Jewish News and wanted to tell you your beautiful and special your little girl is in my thoughts and prayers.

    Though in my case it's not life threatening, I have had health problems since I was a child, that cause me excruciating and debilitating pain all day every day. My illness also has no cure, but I want to commend you on all the work you're doing to educate the public about Krabbe.

    I have felt for a long time that G-d gave me my health struggles to make me who I am, an educator about my illness, a support for others with or without it and a resource to help the community prevent this from happening to others.

    As an adult with similar struggles, I'd like to thank you on Reesa's behalf for doing everything you do to educate and help the community, as well as providing her with a happy, comfortable and fulfilling life.

    Please let me know if I can help in any way.

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  44. my heart goes out to your family. i am so sorry about the terrible news. :(

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  45. Words can describe the feeling that went thru me as I read this. I know that the lord never gives more than we can handle but we still have to stop and ask why sometimes. I commend you and your family for the strength that you have and choosing to share baby Reesa's story with us all. Enjoy her for every moment you have her and know she will always be a angel to us all!

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