I always get sensitive this time of year. Six years ago today the doctors found out Isabella had an phemonia caused by server asiparation issues. They said she would have died within the week if I didn't stick to my gut and bring her to get checked. She had her first (emergency) surgery to clear her throat of all the extra tissue that was causing this problem. She then had a NG-tube for 8 months. (That I would change once a week by myself) We also found out she has a duplication in her 12th chromosome (which could be the cause of her aspiration issues) that has never been discovered before. I wrote N.O.R.D which is the National Organization of Rare Disorders and they confirmed she is the first case of this duplication in the WORLD! There are other cases similar to Bella's but noone has this exact duplication. I'm sharing all this because six years ago today they didn't think my baby would talk. They had no idea If she would be a functioning child . They thought the worst!
Today Isabella graduated Kindergarten and is moving up to first grade. Evan tho it's only Kindergarten it means so much to me that we've made it this far. She can do so much that they thought she wouldn't be able to do. I'm going to continue to research and contact as many doctors as possible to see what this duplication means. Remember a chromosome cannot be removed , there are no transplants God forbid. It is there forever. So I will forever make it so she is comfortable and continue to live this positive lifestyle that we live. Isabella you are my strength. You saved my life so I'm dedicated to save yours. 😘
So keep your Faith up. Stay positive and peaceful. Anything is possible when you believe in it. And I believe my daughter will make it to her college graduation and live to see many more positive things. 🌼🌸🌹🌺🌻 #Gtubekid #duplicationchr12 #raredisease #TeamFancy