Hayden Grace, our little angel

My husband, David, and I have been blessed to have 2 very special little girls. Hailey Marie is a vibrant, active, athletic 4 year old who loves riding bikes, scooters, playing soccer and tennis in the backyard with her daddy, and turning into a monkey on her playset. She adores every baby doll she has adopted and believes with her whole heart that you can never have too many babies or strollers (she currently has 3 - 2 umbrella strollers and 1 double jogger for her dolls). Her mind is always active, albeit a wee bit headstrong, she has a love for learning and being challenged. Hayden Grace, her 16 month old sister, is a McCurdy through and through - looking just like her daddy and many of her baby pictures could be mistaken for her cousin, Maggie (Dave's brother's little girl) - who is always smiling and affectionate! Although we have raised our girls in the same home, I am amazed at how different Hailey and Hayden are - from their eating and sleeping habits to Hayden's contentment with sitting in a carseat or stroller (Hailey used to scream until my ears rang), yet adversity to a hiking backpack (which Hailey, of course, loved being in for hours). Even the toys they gravitate to are opposites. So much for my sociological philosophy - maybe children aren't a product of their environment after all! One thing is certain though, they both adore each other with such a pure and innocent love. Watching them interact fills my heart to overflowing with gratitude for all God has given us.

Here is a little update on Hayden… her neurologist ordered chromosomal blood work and we received the results late last week. She has a genetic condition called “Angelman’s Syndrome” – it is a rare condition, located on the maternal 15th chromosome. Reading up on it explains much of our stress and grief related to her over the past 16 mos for she exhibits almost all character traits to a degree, everything from her reflux, chronic ear and sinus infections, lack of sleeping through the night, balance issues, not talking, overly happy demeanor, and eating/swallowing issues. The largest heartbreak for us is that many children with this condition never walk or talk and develop seizures as they grow. She may never say “Mommy, I love you” but she already showers us with love and kisses and you can read a thousand words in her deep blue eyes. The greatest blessing with them is that they really are living angels. They have the happiest disposition, always smiling or laughing. They do not judge others or feel the pains of prejudice. Other than what they can’t do, they look “normal”. They are very loving and can understand the world around them, just have trouble communicating. We struggled for the first 48 hours with the news, but now truly believe God put her in our lives because He knew we need her as much as she needs us. With my PT background, Dave’s sincere, compassionate personality, Hailey’s love and devotion to babies, and even Tucker, our dog’s, loyalty to his girls (he never leaves their side) – Hayden couldn’t be in a better home. Plus, Dave and I have never been ones to back down from a challenge or adversity, anyone who knows us can attest to that. Isn’t that genetically predisposed as well???

We have been reading up on all the current research related to Angelman’s. It is truly fascinating. The main clinical finding is that nothing is mutated or destroyed in the body, just a missing component found on the maternal 15th chromosome. Already, they have been able to reinstate the “missing piece to the chromosomal puzzle” on mice and the AS symptoms or deficits were completed restored. The thought process is that they should be able to do this in humans as well. Another area of research is trying to “turn on” the dormant male 15th chromosome counterpart bio-chemically (since it is perfectly healthy and just sitting there doing nothing in the body). They are exploring literally 14,000 different chemicals that are already FDA approved to see if any of them “turn the green light on” on the other side. All of this makes me extremely hopeful that there is a cure and it really is just a matter of short time to make it click. This past weekend, the Angelman Foundation had a convention in Orlando where they announced the formation of the “Angelman Syndrome Research Institute”. Rather than wait for government funding or a pharmaceutical company to cover the overhead for treatment options (the mindset is that they are so close to a cure, they don’t need to get lost in “treatment of the disorder” mindset), they are privately funding the research since the technology and knowledge is already there. We are definitely going to continue to study and learn as much as we can about this.

Hayden is so high functioning already (plus, having parents as she has, she will not have the ability to slack off with her therapy). For example, she began sitting independently at 6 ½ months. I have read where many angels don’t even have the muscle tone and balance to sit until they are 3 years old. We truly feel blessed and that this isn’t tragic, just different from the picture we envisioned for our girls. At least they won’t be yelling and fighting like many siblings do!

I plan to add posts related to Hayden's medical history, current struggles as well as victories we celebrate, and updates on what I learn about Angelman's Syndrome, research and the cure. I hope our experiences, love, and faith help others who may be struggling to find answers as well. I am sure there will be days where tears will blur my vision while I type, but others where God's spirit will guide my words. Please share our blog with friends and family. Through knowledge, faith and prayer, all things are possible. God bless.