Mila Fights 15q24 Microdeletion Syndrome


Limp noodle, lazy bones, Mila bird, noodle bear…those were just a few nicknames we had for our sweet baby.

She loved music. She loved being talked to. She loved to be loved. Her head bopping received attention everywhere we went. It was her personal dance move. Once she could sit on her own, that is all she did.

Absent speech, crawling, walking, rolling over, brought grave concern at one year old. We sought early intervention and have been receiving amazing care from our therapists for almost four months. At almost 18 months old, my daughter, Mila, is just now beginning to crawl.

She doesn’t talk, but she makes the sweetest, most beautiful sounds. Her blue eyes sparkle for miles, and her smile is electrifying! After an MRI and a lot of blood work, her genetics panel came back with an abnormality called 15q24 microdeletion syndrome. What the heck does that even mean?

Unfortunately, it is a new found disorder that does not have a lot of supporting evidence. The spectrum of quality of life is so broad, we might have unanswered questions for years to come. It will be many months before we can meet with a genetics team.

I do not know where to even begin.

I need more answers.

I need more evidence.

I want to be involved.

I want to talk to other moms fighting this same fight.

I need to give Mila the best quality of life possible.

I will fight for her until I take my last breath. We have to fight. If we don’t, who will?

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Global Genes Comments

  1. Samantha Torres says:

    Hello,

    My daughter also has 15q24 microdeletion. There is a support group on Facebook without about 65 parents who also have children with the same microdeletion. This support group is amazing because for the most part we are all dealing, or have dealt, with the same concerns. Please feel free to reach me on FB so I can add you to the group if you are interested.

  2. Anthony carter says:

    What happened???

  3. Mila is an inspiration to my daughter Riley (15q24 sister). Thank you for your blog it has helped us understand so much about what Riley is undertaking.

  4. Michelle says:

    Kirsten opie-
    Have you joined our fave book group 15q24? My daughter also has a Mickey button and will be two next month. Cpr-instructor@hotmail.com

  5. Kirstin Opie says:

    Hi – my daughter has the 15q24 microdeletion syndrome. She was diagnosed at around 10mths old following months of seizures on and off. She is the only one with this syndrome in New Zealand so it is hard to get information on what other kids are doing and what issues they are facing with the same syndrome. She starting walking at around 2 yrs and is now 2 and a half. We are only just starting to get a feel for some of her areas of developmental delay – speech, fine motor skills, feeding issues (has Mi-Key button for all fluids) etc. We are just taking each day as it comes but would be interested to hear how others are going who have kids at a similar age with the same syndrome. Happy to let you know the various things we have had to go through in the last 1 and a half years.

  6. Sarahbeth says:

    Have you joined us on Facebook? We have a 15q24 group page. My daughter Bella also has the syndrome.

  7. So beautifuly worded. I type this with tears rolling down my cheeks and the srean becomes difficult to see because my eyes too are filled.
    You described my little man to a T. He however has a megadeltion to his 2 chromosome (short arm) 22.2-22.1 Presently he is the only case reported.

    Sometimes I feel like I am island and no one knows who we are or the language we speak. Until I found this site.
    Thank you.
    May the hope (and prayers) continue.

  8. Michelle carter says:

    Hi thank you for sharing your story my daughter was also diagnosed with 15q24 micro deletion syndrome. No one could possible like another mother seeing there child’s struggle.

  9. Debra Whaley (Nana) says:

    Thank you for sharing our Mila with others. She is an incredible little girl whom we love so much. You are a wonderful mom and I am so proud of you as well as Michael . Sometimes we wonder why we are given a certain path in life but I see God’s hand in every step you are taking. I love you so much!

  10. Sarah jones says:

    Wow what a beautiful beginning to an incredible testimony you have. You are an amazing mom that I look up to everyday and I know you will fight for answers and fight for our Mila bird. We love you!

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