Natalie (left) and her younger sister, Jessica
on Natalie's Sweet Sixteen.
In the beginning of February, we celebrated Natalie’s Sweet Sixteen. We decided to mark the event with a family photo shoot. The weather could not have been any better. It was sunny and pleasantly warm with highs in the low 70s.
We’re elated that the grand mal seizures have pretty much stopped but Natalie continues to depend on others for all her basic needs. It is tiring but he have a visiting certified nursing aide that helps and it doesn’t hurt that her younger sister is eager and able to help also. We know Natalie tries to communicate the best she can with her smile, laugh and eye contact but we simply want more and keep hoping for a cure.
We are excited that there is progress in research for finding a cure and treatment for Rett Syndrome. NNZ-2566, now named Trofinetide, recently cleared phase 2 clinical trials. It supposedly helps in building more connections in the brain cells. Not sure how much of an impact it will have but it is something. Thank you, Neuren Pharmaceuticals. We can't wait to see it becomre available and see what improvements we'll see in Natalie and others affected by Rett Syndrome.
We miss the Readington area and New Jersey but we have made adjustments and enjoy living in the Raleigh area of North Carolina. It is warmer and with the growth, it is becoming more and more like our home state.
Thank you for all the love and support you provide for our family. We are truly blessed to be a part of Shannon Daley Memorial Fund.
Natalie (right) and her younger sister, Jessica
on Natalie's 10th birthday.
Natalie is a happy camper, enjoying life and spreading happiness to others. Although Rett Syndrome has robbed her abilities to walk, talk, feed herself or simply take care of herself, she is continually smiling and laughing and it is definitely infectious. No matter how rough our day is, one look at her smiling and laughing changes our mood every single time.
Although Natalie remains acutely petite we are happy and relieved that she is gaining the necessary weight to be relatively healthy and thus eliminate the need for a feeding tube to be put in place. As she grows, we are concerned about safely transporting her, especially carrying her up and down the stairs. Thanks to the Shannon Daley Memorial Fund, when the time comes, we will be able to install the necessary equipment for us to safely transport Natalie up and down the stairs. The challenges ahead for Natalie and our family are great and many. But the Organization has definitely impacted our lives in lessening the difficulties that lie ahead.
Prior to being a recipient of the Fund, our family was paralyzed as to how to live our lives and not knowing how to handle the difficult financial situations ahead of us. But thanks to the Shannon Daley Memorial Fund, we are certain that Natalie will receive the prompt and necessary care and attention she needs to remain healthy and happy long into her childhood and adult years. The Organization has lifted our spirits, given us comfort and hope in knowing that no matter what challenging situations lie ahead, Natalie will be well cared for. We know that the day is coming soon where we will need to wisely draw on the financial gift given to us for Natalie. But knowing that so many people have contributed to ease the pain and strain of our daily life comforts us and makes us proud and grateful that we're a part of the Shannon Daley Memorial Fund Family.
The Hong Family