The Beasley Family

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How old was your son when he was diagnosed with 22q? - Owen was FINALLY diagnosed just shy of his first birthday.  Those 9-10 months were the hardest of our journey.  Owen had faced open heart surgery at just four months old, and he failed to hit milestones once he was healed.  Call it Mother's Intuition, but I knew from the moment we conceived him that something wasn't right.  We had at least 10 specialists that we saw on a regular basis.  They all treated the symptoms before them, and regularly told me he didn't appear to be "syndromatic."  After his check up with Cardiology, getting an all clear even with his other issues (gastro, immune, ENT, endocrine, failure to thrive, etc.), I dug my heels into Dr. Google for days.  I cried, I begged, I prayed, and I searched every one of Owen's medical charts for something I may have missed.  I finally self diagnosed him, and narrowed it down to two syndromes: DiGeorge (which I would later find to be commonly called 22q) or Williams Syndrome.  I begged our pediatrician to order a FISH test or microarray.  She hesitated way too long, and the Momma Bear in me reared her ugly head.  I demanded an appointment before I left that building, or I would "fire" her and her staff.  Six long weeks later, we drove an hour away to hear his results.  I went with just Owen, and listened as they said my baby boy had 22q11.2 Deletion Syndrome.  I maintained my composure, placed Owen into his car seat, closed the doors to our SUV and sobbed.  The entire hour home was a complete fog...I just cried and drove.

How has 22q changed your family for the better? - 22q has changed our lives in so many different ways.  Before Owen was born, we were a family of three.  We worked, we slept, and we repeated each day.  Having Owen would change all of that.  Owen and 22q taught us that each day is special.  Granted, many of those days would be filled with appointments and worries, but at the end of the day we knew we had each other.  Owen has taught us all something within his 4 years.  Our oldest son, Paxton, is kind, patient, full of love and curiosity for all people.  He has a special bond with those who many struggle more than the average person.  Personally, I have learned to be an advocate, a nurse (with no degree), and a stay at home mom to now 3 kids.  But most importantly, Owen and 22q have taught me to live.  Josh, my husband and father to these amazing kiddos, has amazed me beyond belief.  I secretly (now not so secretly) think that Owen having 22q saved our marriage.  He's always been a wonderful father and provider, but now it's as if we have a purpose and drive.  We must succeed at not only our marriage, but this life that has been handed to us.  Owen depends on our strength to help him through his journey.  Kennadie was thrown into the mix just two years after Owen was born.  She's a beautiful little girl who just knows this crazy journey as normal!

What is Owen's greatest challenge with his diagnosis? - Owen has faced many challenges, and now looking back, I wish I hadn't stressed so much.  He took longer to do most everything.  Even now he faces speech issues, gastro issues, more ENT related issues, and a few other minor things, but here he is!  He's thriving and making his own graph on growing/learning charts.

What is Owen's biggest accomplishment? - Owen's biggest accomplishment is life!!!  He's been through more than most will go through in a lifetime.  "They" said he may never walk, talk or even live.  He has proven everyone wrong and continues to make huge leaps and bounds.

What one thing do you need most from the 22q community and/or our foundation? - I personally would love access to 22q Clinics.  We all know how hard it is to gain access to these opportunities if insurance doesn't allow it.  I hope that one day each of our children is granted all of the medical care that they need, and that each doctor we see knows exactly what 22q is.  It all starts with us advocating for our kids!

What is one thing you enjoy about being part of the 22q community? - The day Owen was diagnosed, I searched Facebook for support groups and foundations.  After one single post in a support group, I had 20 new friends, and that number only went higher from there.  I have considered these people family from day one.  We have watched our children grow together, we chat back and forth about life, we have secret groups to share our stories, and we truly love each other.  We are more than just a community, we ARE a family!

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