Michael Warechowski IV

Updates on our sweet Michael

Our Story

We have created this page to share our story and keep everyone updated on our journey. We also hope to raise awareness for Metachromatic Leukodystrophy. Please take a moment to read our story. and stay updated on our journey. We have set up a medical fund for Michael so if  you’d like to make a donation, simply click  on “Donate.” We appreciate your love and support.

Most people get a lifetime with their children. Not us. Not any of the parents of late infantile onset MLD children. Metachromatic Leukodystrophy is quite severe, progressive and fatal. Most children live to age 5, some to age 10. Michael will end up needing constant care as he begins to deteriorate, losing his ability to sit up, crawl, eat, see, hear and eventually, breathe. The only treatment for this disorder is a bone marrow, stem cell or cord blood transplant. Unfortunately, transplant is not generally recommended for late infantile onset of MLD so the we have decided not to put Michael through transplant but rather, to keep him at home where he is happy and we can share him with everyone who loves him.

Michael is one of the sweetest little boys you will ever meet – everyone who meets him agrees. Those who are closest to him will tell you that he is more snuggly than any child you’ve ever met. He loves his little “babies” as we call them – his little stuffed animals that he hugs while he sleeps and insists on carrying around with him everywhere he goes. Michael was a perfectly healthy, normal baby for most of his life. He reached most of his milestones right on target – rolled over at 4 months,  sat up at 6 months, crawled at 8 months and began talking at 10 months. In fact, his speech seemed to be above average as he was saying sentences as early as 16 months. He learned his colors and shapes around 18 months and he now counts all the way to 20 (“Count to 20, holy cow” as Michael would say). When Michael finally decided to stand up and try to walk, Katie and Mike noticed that his feet looked a little funny so they began with a series of doctor’s appointments including the Chiropractor, Pediatrician, Orthopedist and finally, Neurologist. The neurologist ordered an MRI and when they found something questionable in his brain, they ordered some blood work. Our worst nightmare came true when they received the results from the blood tests.

On Tuesday March 27th, (Katie’s birthday), we found out Michael’s diagnosis – M….L….D

You can read more about this terrible disorder by clicking here.

38 responses to “Our Story

  1. You two are an amazing couple and Michael is lucky to have you. ❤

  2. Vickie Bresnahan says:

    You guys are amazingly strong. Thank you for sharing your heart breaking story and keeping us posted on your journey. Enjoy every moment with your beautiful baby.

  3. Tony Knox says:

    Meek, I am sorry to hear about the the bad diagnosis. I will be praying for you and your family, especially Michael. Love you guys!!!

  4. Kelly Paul says:

    You have a beautiful family. Glad to have seen you on the MLD support group list. Wish I lived close to you all. Glad the internet keeps everybody close. Many blessings to you.

  5. Kim Brown says:

    Katie n Mike… Just clicked on the link on the MLD family emails n read/watched video…. Ur story is so much like ours…. Makes me sooooo sad to have another MLD family member… Sitting here w tears….. If u ever want to talk, plz call… 732-299-9798 ❤ Kim n Reese

  6. Susie says:

    My thoughts are with your family, words cannot be enough,but know that through your story awareness of MLD is being known to those that have never heard of it such as myself. Your fmaily is beautiful

  7. Ellen says:

    Please know that the entire St Ann’s Community is surrounding all of you in prayers…Blessings & peace, Ellen, Linda, and Maria Elena, St Ann’s Pastoral Care

  8. Sheila says:

    God Bless You all!!! Enjoy the time you have together. Will be praying for you!

  9. Juan Mendez says:

    You guys are wonderful! We wish you strength, and joy in each precious moment!

  10. DJ Kuehn says:

    Please know that your family will be in my prayers every night. God Bless You all !

  11. wkpartin@gmail.com says:

    It was such a joy to see you this past Christmas-time! I just read your story, and I want you to know I’m praying for you all. My mother’s heart is breaking for you, but my Spirit rejoices! God is in control of all things, and He will gain glory through the life of your son. He is so precious! Praying that God’s peace, that surpasses all understanding, will be yours. Praying God would give you the energy to take care of Michael in every respect.
    Love y’all!
    Kim Descalopoulis Partin

  12. Sherri says:

    Dear mike and Katie,
    Words cant express our feelings about what is happening to your precious Michael and to both of you. Our heart aches for him and your family.I am sending this to all my contacts and prayer lists. With lots of love and prayers, Sherri and Preston

  13. Anne Christiansen says:

    I have walked in your shoes…we lost our first child, Peter to MLD. Stay strong!

  14. Melanie Cartwright Giddens says:

    Mike, my heart broke when I heard about Mikey’s diagnosis. My thoughts & prayers go out to you, your family, and especially to that precious boy.

  15. Jenn Harris says:

    My thoughts and prayers are with you and your family! You are a strong and beautiful family, and thank you for sharing your story….. it truly breaks my heart what you are having to go through, but trust, God will give you all the strength to push through!! See you soon at Red Sky for the Fundraiser!!!

  16. Jesus Rosales says:

    Awesome story! It’s amazing the way you make me feel, it’s awful how the people over the world is only worried of material things, of money, of work, and is forgetting what is the important part. Love, family, carrying on. You are a living example of strength, and Michael is blessed to have you, and you are blessed to have Michael, everything happens for a reason, he’s your little angel, and he is so powerful, so smart, so loving, so everything that God had to make him special. He is not as any other child in the world, he is unique, and an inspiring person.

    God bless you

  17. Cindy Simmons says:

    I am Dennis Simmons mother. He told me about your precious son last week and have been praying since then. Wish we could more but we will continue praying.

  18. Judy Ragan says:

    Katie and Mike …. I feel so blessed to have met Mikey and his amazing parents. I am in awe of your courage to embrace this most difficult journey. It is a journey that could easily cripple most people and marriages. To watch you two giving Mikey so much of your tender loving care and still taking such good care of each other shows your amazing strength, love and resolve. This really touched my heart and I am better for knowing the three of you. You are all in my thoughts and prayers. …….Judy 4th Floor SR

  19. msollicito says:

    Is there anything we can do to help? Let us know if we can – maybe we can at least help create some wonderful memories for you guys to create with him? Like going to Disneyland or something?

  20. Natasha says:

    My prayers and thoughts are with you!

  21. lbrygoddess says:

    I just saw your story on the news. I cried and cried. I have 3 year old twin girls and I cannot imagine how much this hurts. Sending prayers, love, and a small donation. I wish I could do more. I felt so helpless watching.
    –Nolan R.

  22. Dietrick says:

    May God’s love surround you and know that you are in my every prayer. God Bless you.

  23. I remember seeing your family’s story on the news a few months ago. It truly broke my heart. As a mother myself, I cannot begin to imagine the rough road you are travelling. I am saddened to hear things are happening so fast. My prayers and thoughts will be with Michael and your family. I will pray for his comfort and your peace. God Bless!

  24. Mandy Borland says:

    I am praying for your sweet family!

  25. The West Family. says:

    Our thoughts and prayers go out to you and your family. Words cannot express our deepest feelings about what is happening to your family. Your family will be in our prayers.

  26. Bridget says:

    I read your heart wrenching story today. I am a total stranger sitting outside a doctors office in my car, on my phone, in Omaha, NE and was so moved I was sobbing. Someone I know on facebook who is going through MLS with their daughter posted your story on Facebook. I have been thinking of you all day. You guys seem are so strong. I just can’t fathom going through this horrendous disease. Know that you have prayers coming from everywhere and stay strong. I am planning to donate on payday. Thank you for reminding me how precious life is and what a real struggle is when I am whining about something silly with my kids. I am sure hugging and kissing Michael all day long will help and I hope you can raise enough funds to be able to stay home with him.

  27. Shon says:

    I’m praying for Michael. God bless your family!

  28. Tracy says:

    My thoughts and prayers are with you all. May your family take some comfort in knowing so many people are praying for your sweet angel, Michael. He knows and feels your love and that is his comfort. I have a two year old and can only imagine what you are going through. Your story and journey should be a lesson to us all to put family first and all the other unimportant things in life won’t take up so much of our time and energy.

  29. Niki Patterson says:

    I have cried with you. You are in my prayers.

  30. Yvonne Givens says:

    Your story has touched my heart and I am sending my prayers your way for sure. God Bless that little boy of yours.

  31. g.giarto says:

    I have not been able to give a comment,
    but I will listen first. nice blog.

  32. Dawn Montuoro says:

    My prayers are with u and your brave son. I am a licensed CNA and currently work with a child with MITO. I’m a firm believer in miracles, my own mother being one of them. My mom was paralyzed with polio from a swine flu vaccine. She had 9 cardiac arrests, was clinicly dead for 11 mins, 17 surgeries on her feet, an unfailing faith and a mom who wouldn’t accept the thought of losing her child. My mom is now on of the leading Chiropractor in the state. U would never know she was ever sick except for a limp. I new I was called to be a care taker. I worked hospice and now wk with children. I wouldn’t have it any other way. I see there determination and most don’t know they have a challenge to overcome. Special children I believe are a gift from God for the strong. Bless u and ur family. If ever I can be of help or service other than prayer, pls just ask. Dawnmontuoro@yahoo.com. God bless and keep ur son. I pray a hedge of protection around him and pray for ur continued strengths as well. Always- Dawn

  33. Prayers for you family. I cannot imagine what you are going through. Heard about your page from Ride to Give. They are amazing non profit who with the help of the RTG Army are doing so much for so many. May you have comfort and peace. Thank you for sharing your story…

  34. Christina Cotter says:

    I am so sorry your little sweet angel has to go through this- you will be in my prayers. I hope he continues to make your heart smile every day as he seems to be doing a good job of this already!

  35. Palmer says:

    I heard your story a few years ago, but just checked back in to see how you all were doing. I cried and cried again for all your family is going through. You are being lifted up in prayers by myself and so many.

  36. Scott Baumann says:

    This week I had the honor of meeting Mike, Katie and Mikey. I was immediately touched by the care and love you showed for your son and for each other. It was hard for me to put into words as I had just met you guys and here I was, with tears in my eyes. You are an inspiration for many, and if there is ever anything that you need that I can do for you, please ask. You will be in my prayers and in my thoughts. He is a lucky little boy to have you two.

    • Thank you, Scott. Michael is what keeps us going – he brings us so much joy! It was a real honor to meet you. You are a very motivating person and a real representation of what Fitness Together is about. I look forward to seeing you at next year’s conference!

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