Welcome to HopeForSerenity.org
Since finding out that Serenity has Batten Disease, our family has had to come to terms that the precious life we have been blessed with, will only be with us for a short time. This website is both a place to share info and experiences with this disease, and a living memorial for Serenity. The "HOPE" is that this site will share information that can help another family or lead to a cure.
“And sometimes, against all odds, against all logic, we still hope.”
Ellen Pompeo as Dr. Meredith Grey
“If there’s life, there is hope.”
“When you go through deep waters I will be with you.”
The Full Story
This page has been created for Serenity who has Batten Disease.
To quote Texas Children's Hospital:
“Batten disease is a fatal, inherited disorder of the nervous system that typically begins in childhood. Early symptoms of this disorder usually appear between the ages of 5 and 10 years, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer cognitive impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and demented. Batten disease is often fatal by the late teens or twenties.”
Click the following for more information on Batten Disease:
Texas Children's Hospital (This is where Serenity is getting her treatments from)
National Institute of Neurological Disorders and Stroke (NINDS)
Serenity and the parents have been tested and it has been confirmed that she has Late infantile NCL (LINCL): CLN2. She has had surgery so that she can receive her treatments easier. Serenity will have to have a chromosomal infusion into her brain every two weeks for the rest of her life.
These treatments are supposed to slow or stop the progression of the disease. Without the treatments, she will developmentally regress into a vegetative state and eventually her body would shut down. The fact that she has had a couple is seizures means her regression has already started. But it also means that this was caught really early, and that expands the chances of the treatments being more effective. The disease is rare and Serenity is the first to be diagnosed with it in North Texas and the youngest in the world.
The HOPE is that the treatments will allow her to have a full life even if it limits her ability to live in different places. The treatments were first being given at Texas Children's Hospital in Houston. The treatments are rare and are also being studied. So the information and administration of the treatments and it’s effects have to be closely noted and protected. If this had happened 10 years ago, we would be planning to spend as much time with her as we could before the disease took her. These treatments are the only ones available in the world. Other patients have to go to Houston for their treatments as well. So we are very lucky to be as close as we are by living in Dallas.
Most days, Serenity is in a good mood and has a positive attitude. She also loves playing and giggling and handing out lots of hugs and sugars (kisses). My hope is that she never looses the ability to be that way, no matter how she can express it.
Please pray for Serenity and our family as we start this new normal in our lives. Please pray that all goes well during this chapter so that Serenity can write her next chapter herself.
We would like to thank everyone who has extended a helping hand this far. Your efforts and help is greatly appreciated and welcomed. Because of your help, we are able to spend this precious time with Serenity while she advances through this transition.
We hope and pray that this is the first step in many that Serenity will get to make as she progresses through this treatment. We also pray that she will be able to grow without the disease getting in her way.
The world deserves to have this bright little bit of sunshine. This little girl will absolutely make your day. To watch her little happy face light up when she sees you, and to receive one of her strong, love filled hugs is something everyone should be able to experience! Serenity is just simply what love would be if it was a person.
One again please pray for our family and the precious life we are fighting to keep.
**1.28.21 @ 2:00PM UPDATE**
The doctors have talked to the parents and have informed them that what usually happened in these cases is that this disease kills brain cells and causes shrinkage of the brain. This causes the space between the brain and skull to widen and is a measurement of the progression of the disease.
In Serenity's case, there is normal space between the brain and the skull which shows that this was caught in the very, very early stages of its progression. In fact, the surgeon said that Serenity has the most brain matter and the least amount of shrinkage he has ever seen with this disease. He says the the progression is verrry small and this was caught the earliest ever in the study of the disease!
I want to thank the family doctor that caught this and had the insight and skill to suggest the initial testing that led to the correct diagnosis. If it were not for his professionalism and dedication to his profession, this might have gone years without being diagnosed and she would not be in as good of a position as she is now. I also want to thank everyone for their prayers and well wishes. I think God has been watching this whole time and he heard everyone. Lots Of Love...
** As of mid March 2021, Serenity is no longer needing to make biweekly trips to Houston as the hospital has been able to set up her treatments here in DFW!
Get in Touch
We are needing help to further expand and develop this site. We want to share experiences and information about Serenity's life and Batten Disease. If you have any questions, suggestions or would like to help, please submit the form below and we will get back to you as soon as we can. God Bless!
“Hope is praying for rain, but faith is bringing an umbrella.”
“Faith is being sure of what we hope for, and certain of what we do not see.”