A Distinct Identity
Here at The Adleigh Is Forever Foundation, we are driven by a single goal; to make the lives of each DIPG child a little brighter. Having a child with this disease is heartbreaking. We strive to lessen the burden on the family at this difficult time in their lives and make a positive impact with all of our pursuits.
Adleigh was diagnosed with DIPG on November 1, 2017 at the age of three years old, after showing balance issues that progressed very quickly to almost total paralysis on one side of her body. This came as a surprise as she had always been considered to be advanced in her abilities and very intelligent. Doctors treated her with six weeks of radiation. Adleigh did very well in treatment going five days a week and resting on the weekends. This radiation gave this brave girl a honeymoon period where lives was almost normal again. However DIPG will always come back and the disease is fatal when it returns. Armed with that information Adleigh's mom decided to take her and make as many memories as possible. They traveled all over the country and to Mexico trying to fit a lifetime into the next several months. The community came together to rally around this amazing little girl. Adleigh lived with the disease for nearly thirteen months and passed away on November 30, 2018.
The Adleigh Is Forever Foundation wants to spread Adleigh's message of hope, compassion, and the knowledge that life is just too short. Seize the day, travel, eat that extra piece of chocolate but be sure that you are making your time count! We believe that a single action can make a difference in the community, and that collective action can greatly impact the world. Through advocacy and outreach activities, we work tirelessly each day to contribute their part to helping children that are suffering from DIPG by helping to bring to them resources that are needed. We also aim to provide crucial awareness for this horrible and incurable disease. These children deserve a chance at life.
The Background
Diffuse Intrinsic Pontine Glioma or DIPG is an incurable, inoperable and always terminal brain cancer. This disease is the worst cancer known to man. It is very aggressive in nature and very little is known about it. It is a rare cancer and is mostly found in children from the ages of four to eleven years. The survival rate for this type of cancer is less than one percent with ninety percent passing away less than a year after being diagnosed.
The DIPG tumor itself, and especially in combination with hydrocephalus, can cause the following symptoms:
- Double vision
- Difficulty in controlling eye and eyelid movement, and facial expression
- Difficulty chewing and swallowing
- Difficulty speaking
- Weakness in the arms and legs
- Loss of balance
- Difficulty walking
- Clumsiness
- Headaches (especially in the morning)
- Nausea and vomiting
- Fatigue
Because of the aggressive nature of DIPGs and the rate at which they grow, symptoms usually get worse quickly.
The only treatment for DIPG is radiation. This may only give the child a small window of time that the kid feels almost normal and is able to go back to how they were before the symptoms were present. This small amount of time is truly all these children have left, The tumors will start to grow again and the progression will be devastating.
Next is the stage of progression and finally to death. This is something that is truly the worst thing a parent will ever see in their life. The most cruel thing that happens with this disease is how the brain, the very thing killing them, will stay intact and normal functioning as the body functions will shut down one by one. The tumors are located in the pons area and at the base of the brain stem. This is the part of the brain that controls all of the body's vital functions so that would be breathing and heart beating. The last month of a child's life is absolutely the most horrific thing you could ever imagine to watch and these kids need help, and with your help we will provide that help. Six months will not work for them, they do not have six months. PLEASE join us in this fight.
Making A Difference
The Adleigh Is Forever Foundation is in the business of helping the children affected by this horrible disease. The work we do at our Non-Profit Organization is aimed at providing a way for families to have the resources that are needed to aid in the fight of living with DIPG.
Aiding In The Fight Against DIPG
At The Adleigh Is Forever Foundation, we are dedicated to stepping up our efforts in addressing this issue. Traveling to and from appointments and radiation therapy is by no means an easy feat, but through cooperation and community generosity we believe we can facilitate progress in this area. If you would like to donate a new wagon to help a family get around the hospital a little better we can be sure that this much needed tool gets to the children that need it most. We are always striving to make a difference, and invite you to learn more and lend your support.
Reinforcing our Commitment
With this initiative, our goal is to promote opportunities for those in need to be able to receive the items or services they may need. With access to the right resources, these families can spend more time making memories and allow them to relax and enjoy their days together. Learn more about our work by getting in touch with our team today.
“Every man is guilty of all the good he did not do”
