Bless Addybells BIG HCM heart and help her get the medical care she needs.

Addybell was born with Hypertrophic Cardiomyopathy ( an enlarged heart) as well as three holes( congenital defects)and a multi system disorder that are all very unknown to her local doctors . Theyhad never seen her disease and she has been mis managed her entire life.At birth the pediatrician heard a murmer and requested she be seen by a pediatric cardiologist but there are NO pediatric specialists on our small island of Kauai. So we had to go home and wait 3 months to fly over to be told he had never seen a heart like Addys and sent us home to wait another month for an MRI. This is where they looked at me and her dad to see if it was genetic and told us that her AND her dad ( who had never had any symptoms before) had Hypertrophic Cardiomyopathy and just told us it means she and he could drop dead at any time. Horrible bedside manner.. I know but what I later learned was he didnt truly understand this disease. I learned this because I was forced to learn everything I could about it because he told me from day one he had never seen a pediatric patient.. or any patient especially a newborn with it and he did not feel comfortable managing her. He also informed me there is no cure and I she is at a great risk living out here on the small island of Kauai where there is no pediatric cath lab in case of emergency. He then explained that it would be a waste of our time to move to that island to be closer to him because he was not experienced enough to manage her.
We later discovered they had missed 2 holes in her heart ( she has three) and discovered she has a rare muti system disorder on top of HCM which only a handful of people have been reported/studiedmaking helping her far more complex. She now sees 7 specialists and after 9 months of being mis managed they finally listened to me that she was not breathing right and she is now on Oxygen. She was found to have close to 200 apneas( hypoxia) a night and her brain does not tell her to breath called central apnea and she has Obstructive apnea on top of that that causes her to choke and aspirate in her sleep and blocks her airways.
I have been fighting since day one to get her the care she needs and while we have come closer and closer.. we are still not there yet and so many unknowns about her condition.Her list of health issues is too long to go into but despite the challenges she is faced with she always has a smile on her face and spreads love wherever she goes. Her big heart is felt by many!She is the sweetest miracle ( I conceived her despite being told I would never have children naturally for over a decade and just after a near death trauma surgery for myself in the OR..hows that for beating the odds!?)She is truly my miracle babyand her fathers because of her being born with it he was able to get a life savingpacemaker/defibrillator called an ICD implanted to his heart for protection. She was no accident despite not planning her...she chose us and we are so grateful.

We will do anything to get her the care that she deserves.We cant just up and move.. there is a lot involved nobody can imagine! So much to name a few..insurance, setting up her O2 for air travel and relocation..( insurance only covers in home and we have to get her new insurance with our move)Finding new doctors and relocating our lives and so much more involved. Its a lot to figure out and we are working on that now.Her care requires full time attention and then some and thats not including the advocacy needed to fight for needs with insurance and more so the process is taking longer than it needs to.
There is currently no cure for her disease and very little who understand her seperate genetic disorder and how it affects infantsbut we are hopefull that this move will bring us closer to a team who cares and knows enough to help her overcome it! Her daddy just had surgery at their first visit to the mainland and already has over 60,000 dollars in medical bills in two days of a visitand his heart is much more progressed than hers requiring close follow up and many more surgeries. Baby Addy also needs to see her dad get the care her needs to so he can be around a long time to celebrate life with her so we are trying to get both of them in good hands because they both were sadly very mis managed for long enough and we refuse to sit back and risk their lives this way. We look forward to this new journey and the security it will provide... and we are so grateful for all of your prayers and support! There is no cure for HCM but we ask that you help spread awareness about it so hopefully more interest will spark more help towardsresearch and one day a cure... we refuse to give up hope! PLEASE SCROLL BELOW TO READ A MESSAGE FROM BABY ADDYBELL

for more about pediatric cardiomyopathy...
http://www.childrenscardiomyopathy.org/site/description.php

For more about Hypertrophic Cardiomyopathy....
https://www.4hcm.org/

For more about the genetic syndromes that can cause HCM...
http://www.teamnoonan.org/about/


HI Im Addybell! Guess what...?! By reading this and supporting my cause you are showing me that we BOTH have big hearts and giving me more HOPE! Please don't feel sorry for me.. I am hoping my story will help others and the research they are doing on me will tell new stories to help the doctors help other babies. I don't wish this on anyone but I dont think Im as rare as they think I am and dont mind letting them learn from me if it helps others like me. I really really really love living in Hawaii and playing on the beach but I have to move to be closer to doctors who know how to help me. I dont know why more doctors don't understand my disease called HCM- Hypetrophic Cardiomyopathy but I hear theres not enough research money or attention with heart disease like there is cancer. I do notknow what money is yet but it doesnt sound fair it can keep me and others like me from finding a cure.

So please for me learn what HCM is.. and share the info with your friends at your playground and schools. I hear lots of babies get told they just have asthma or don't get a pulse ox put on their toe when they are born to check for things. I want all babies like me to know that we cant play sports ..ride rollercoasters... and sometimes even play very hard and tons of other thingsbut im still sooooo happy because I have a chance to be here. I dont like going to so many doctors but maybe they can help me more if I get new onesand I be able to have more time playing with My mommy and less time flying back and forth to so many hospitals . I like flying but I dont like hospitals. They say I need to live near an HCM center of excellence or a good Cardiomyopathy team.. that also has a LVAD in case I ever need one.Im really excited to meet my new doctors and make new friends with other babies like me. Im the only one on the islands they know of and sometimes its hard to play with kids with normal hearts because I cant keep up. Mommy found a group of kids like me to play with and mommy is excited to meet their mommys too. They think I have a Rasopathy Syndrome too but cant figure out which one but theres a doctor in Boston who wants to help me and she has a few other kids there who have both conditions I do. By moving there im helping her figure out if more babies could too. I like to help my friends... Im a sweet baby with a big heart mommy says! Thank you for helping me too!
Also Thank you for praying for me and helping me meet my new doctors! Please pray for my daddy and all the other kids and babies out there too!Its kinda cool we get to fight this together...Im not alone and am very blessed to be so loved! Aloha friends..LOVE MISS ADDY <3