Brooke Miller, Age 9, suffers from Cerebral Palsy, Epilepsy, and Aicardi Syndrome. We granted her family some ways they could spend time together. The best part of meeting Brooke is when she kept reaching out to grab my hand. I could feel her love. And have you ever seen a cuter smile?!
"I am still all amazed at the impact this little girl has on our community. Brooke was all about the attention and was trying to hold Neeley’s hand. She could feel the love and joy in the air. I’ve said it before and I’ll say it again, we couldn’t live this medical life with all its heartache and disappointments without the tender mercies that keep on coming. This girl is LOVE and people can feel it. Thank you Neeley for being an angel in Brooke’s life. We can’t wait to share the pictures of our memories we will make together!! THANK YOU Neeley🥰❤️🥰❤️#brookiethebrave #neelyschronicjoyfoundation #specialneeds #aicardisydrome #epilepsywarrior @ Queen Creek, Arizona" -Brittany (Brooke's Mom)
I had the amazing privilege of meeting the sweetest and strongest girl. Hadlee has fought diabetes almost her entire life. I was so excited to bring her a gift basket and the news of gymnastics lessons! She deserves all the joy in the world. Read more about Hadlee below from her mom's eyes.
"Hadlee Jo Brown, age 7 is a happy, playful, creative, and very helpful little girl. She loves horses, dogs and kittens, and one day hopes to be a veterinarian. She loves to swim, ride bikes and is an excellent reader.
When Hadlee Jo was 13 months old, she got very sick one weekend and couldn’t stop throwing up. She was admitted into the children’s hospital in a dka state. She spent a week in the nicu and was a fighter to get her blood sugars regulated. Because of her age and the extremely small doses of insulin she required, they were unable to dose by small injections. Her little baby fingers and toes were black from the testing pricks required every hour. They were finally able to approve her for an insulin pump and we were allowed to go home and learn how to manage her new way of life. She still endures the finger pricks 12-15 times a day, site changes every 2-3 days, frequent blood draws, and a controlled diet.
Since the time of her diagnosis she has had her finger poked approximately 38,325 times, 852 site injection changes, used approximately 126 bottles of insulin, given lots of blood for testing, and taken all of it like a champ. Diabetic awareness is November 14th and in honor of her bravery we put blue strips of color in our hair, polish our nails bright blue and have a treat out for a blue Bahama Bucks!! Hadlee Jo is amazing and we are so fortunate to live in a time when medical knowledge and technology is consistently improving to assist her needs."
A few months ago we were able to send Maverick a care package while he was in the hospital getting surgery. We were finally able to meet him! When we arrived we found out it was the first day Maverick finally had permission to walk a little bit and we were so happy for him! I know firsthand how exciting it is to be able to walk again. We were then able to give Maverick swimming lessons that would bring him both joy and much needed physical therapy. My favorite part of running this foundation is seeing the strength of these young kids who have gone through so much! Maverick sure is one of them.
"Logan is the sweetest, most affectionate 9 year old boy I’ve ever known! He loves to ride his bike, play basketball, swim, and play Minecraft (a LOT of Minecraft). Unfortunately, Logan was born addicted to drugs and was neglected for the first few months of his life, during the worst of the withdrawal symptoms. We came into Logan’s life when he was 4 1/2 months old and have since adopted him and his five siblings. Logan has been diagnosed with several mental and emotional health disorders as well as a severely underdeveloped brain.
Logan’s disorders affect every aspect of his life. Everything that we take for granted is a challenge for Logan; school, family life, friends, sports, personal hygiene, games, everything. About a year ago Logan’s symptoms increased dramatically and have continued to worsen. There are specialists, doctors and therapists trying to work with him, but ultimately, we’re not sure why his condition has worsened. Understandably, it has been incredibly difficult. During a recent assessment of his brain we discovered that Logan’s ability to react to his surroundings is at the level of young toddler. Everything is overwhelming and frustrating and his brain lacks the capacity to process all the stimulation coming in. Essentially, he is a 9 year old with the emotional capacity of a child 1/3 his age.
At this point Logan spends most of his time at home, as social and public situations are too overwhelming for him right now. Although we have a good-sized home and yard, it’s his entire world most days and can tend to feel small. As a result, we are trying to make modifications to our home to give him variety of play while letting him get out all that energy and help with sensory issues. We have an indoor swing but also have building toys for him to create. The trick is to have moments of high energy balanced with moments of quiet play in order for him to learn self-regulation.
One thing we would love to build for Logan is an indoor climbing wall. This would provide an outlet for the energy while promoting mind-body coordination and concentration. We have the location picked out (right outside his room) and a plan for construction, but funding for the materials would be helpful. We truly appreciate the time and consideration you’ve given to our son and are so thankful for the help your amazing organization is offering to enrich his life." -Angela Clonts (Logan's Mom)
As Logan was reading a card we wrote him that expressed that we hoped what we were doing for him would bring him joy, Logan exclaimed, " Well of course this will bring me joy!!!" Moments like these are why I do what I do.
October is Dysautonomia Awareness month! I myself suffer from a form of Dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS). Dysautonomia is an umbrella term used to describe neurological disorders that cause malfunction of the Autonomic Nervous System which regulates heart rate, blood pressure, digestion, temperature control and more. Dysautonomia is more common than you would think, affecting an estimated 1 in every 100 teenagers and including adult patients, a total of 1 million to 3 million Americans. I look forward to shining light on Dysautonomia this month and helping to educate more people on it!
Be sure to watch NBC Channel 12 news tonight at 10. I'm so grateful for a chance to share my story! A little over two years ago, I woke up sick and never got better. Little did I know that God had a plan for me and this illness would provide me with so many life changing opportunities. I love raising awareness for chronic illnesses and sharing a message of joy! Can’t wait for you to hear my story tonight!