Ryanne's New Eye
Donation protected
This was written for a support group of new mom's with Ryanne's rare syndrome. It's the beginning of her story and why we are here:
"Ryanne, my 18-year-old daughter, was diagnosed within her first year of life with Sotos Syndrome. What can you expect? Love like you’ve never experienced before! Complete and unconditional trust in who you are and what you will do for her. The BEST hugs, the wettest kisses and the innocence of a little girl that will last well past when her peers lose it. She will challenge you, she will irritate you, she will bring you to tears…both happy and sad. She’ll walk to the beat of her own drum and have everyone dancing to her beat. She will love everyone….with open arms and a warm loving heart. Medically….you will be on a roller coaster…that part is never easy but our sotos kids….they handle all this like it’s nothing. It will break you, long before it breaks her. You will hurt for what you think she doesn’t have, she will not care or probably even notice. You will have times you wished she was “like the other kids” but as she gets older…you will be thankful she’s not “like the other kids”. You will laugh A LOT, our kids are very humorous creatures and Ryanne finds the craziest things to laugh at. You will think, she’ll never master this….and then you will turn around and she’ll just be doing it! They study, they sit back, they watch…they do not “try”….all the sudden they are just doing. I have five kids, Ryanne is my fourth….she has brought me more joy and happiness in the last 18 years than all my other children combined. You’ve been blessed and this is ONLY the beginning!!"
Ryanne has endured a lot in her 18 years but she is an amazing young lady who never lets anything get her down. When she walks into a room, she will hug everyone around…regardless of who you are or why you are there. She finds something nice to say to everyone she meets and she makes everyone who comes in contact with her feel special. If she knows your birthday or anniversary, she will get all her friends/family to text you and tell you happy birthday. She makes homemade cards for her friends and really just tries very hard to make people smile and laugh. There is just something about her and her ability to make your troubles go away, if even for just a little bit.
She recently told me, for her birthday, she would like to get her eye removed. It’s hurting and it’s ugly. The Doctors have confirmed it’s time to remove it and put in a prosthetic one but now we are down to arguing with disability and insurance companies. Leaving us no choice but to decide we need to move forward without them. To us, this is not an elective surgery and it's certainly not cosmetic and the longer we wait to argue our case, the longer Ryanne has to live in pain. Therefore, we are hoping all her friends and family will help us gather the funds to make her birthday wish come true. Surgery is set for January 27. Her new eye will be built right after this and by the end of February we hope to have all funds in order so she can pick up her beautiful new eye and get back to the business of hugging and loving on everyone.
Our total goal is $10,000. This will pay for the surgery, her new eye and the first year of any adjustments, medications and medical bills associated with this.
"Ryanne, my 18-year-old daughter, was diagnosed within her first year of life with Sotos Syndrome. What can you expect? Love like you’ve never experienced before! Complete and unconditional trust in who you are and what you will do for her. The BEST hugs, the wettest kisses and the innocence of a little girl that will last well past when her peers lose it. She will challenge you, she will irritate you, she will bring you to tears…both happy and sad. She’ll walk to the beat of her own drum and have everyone dancing to her beat. She will love everyone….with open arms and a warm loving heart. Medically….you will be on a roller coaster…that part is never easy but our sotos kids….they handle all this like it’s nothing. It will break you, long before it breaks her. You will hurt for what you think she doesn’t have, she will not care or probably even notice. You will have times you wished she was “like the other kids” but as she gets older…you will be thankful she’s not “like the other kids”. You will laugh A LOT, our kids are very humorous creatures and Ryanne finds the craziest things to laugh at. You will think, she’ll never master this….and then you will turn around and she’ll just be doing it! They study, they sit back, they watch…they do not “try”….all the sudden they are just doing. I have five kids, Ryanne is my fourth….she has brought me more joy and happiness in the last 18 years than all my other children combined. You’ve been blessed and this is ONLY the beginning!!"
Ryanne has endured a lot in her 18 years but she is an amazing young lady who never lets anything get her down. When she walks into a room, she will hug everyone around…regardless of who you are or why you are there. She finds something nice to say to everyone she meets and she makes everyone who comes in contact with her feel special. If she knows your birthday or anniversary, she will get all her friends/family to text you and tell you happy birthday. She makes homemade cards for her friends and really just tries very hard to make people smile and laugh. There is just something about her and her ability to make your troubles go away, if even for just a little bit.
She recently told me, for her birthday, she would like to get her eye removed. It’s hurting and it’s ugly. The Doctors have confirmed it’s time to remove it and put in a prosthetic one but now we are down to arguing with disability and insurance companies. Leaving us no choice but to decide we need to move forward without them. To us, this is not an elective surgery and it's certainly not cosmetic and the longer we wait to argue our case, the longer Ryanne has to live in pain. Therefore, we are hoping all her friends and family will help us gather the funds to make her birthday wish come true. Surgery is set for January 27. Her new eye will be built right after this and by the end of February we hope to have all funds in order so she can pick up her beautiful new eye and get back to the business of hugging and loving on everyone.
Our total goal is $10,000. This will pay for the surgery, her new eye and the first year of any adjustments, medications and medical bills associated with this.
Organizer
Tara Tyler
Organizer
Brays Landing, VA