Hope For Brynne and Kendall

One month ago our world stood still when both of our daughters received the rare, and fatal, diagnosis of the genetic disease Niemann Pick Disease Type C (also referred to it as “Childhood Alzheimer’s”).  They are only 8 and 6 years old. When we received this devastating news, our worst fears became our reality. We now are reaching out for your help to save our precious little girls.  Without treatment and a cure our little girls will likely not live into or past their teenage years.  They truly bring so much joy to our family and those around them. We need a miracle for our sweet daughters and are asking for your support.

Our Family

The Lord has blessed our lives with such gracious children, they amaze us daily with their pure love.

Brynne is 8 years old, spunky and fully of life! She reached all of her baby milestones as expected, but as she started pre-school she had a hard time retaining information. As she now comes to a close of her 2nd grade year, she can hardly communicate, is losing independent skills, and is even starting to get lost easily.

Kendall is 6 years old, gentle and loving with a tender and strong spirit.  She loves laughing and being with her family. After a long year of constant pain, at the age of 4, she was diagnosed with Crohn’s Disease.  When this happened, we were heartbroken and yet we were determined to help give her strength to endure.  In addition to her battle with Crohn’s Disease, she has always struggled with speaking clearly and learning new skills, but she is determined and slowly, but surely, is grasping new concepts.

Devun and Wyatt are two kind hearted and compassionate brothers who love their sisters deeply. They are 11 and 4 and do not have NPC.  

The Diagnosis and Disease

Both Brynne and Kendall were born healthy and thriving, reaching their milestones on time. Around age three we started noticing Brynne’s development starting to fall a little behind other kids her age. Her teachers always told us she would catch up the next year. However, after watching Brynne start to lose daily skills, we were determined to get help.

We tried getting into Loma Linda University for answers. We did not know what was happening and wanted to do anything we could to help her, even expensive therapies outside of insurance. At the same time, we were anxiously waiting for Loma Linda to get the girls in to see a pediatric neurologist. This was a very painful and fearful time. With much persistence, in December 2016, a pediatric neurologist was able to see Brynne.  He took extensive time to watch Brynne and go through all concerns. He even admitted her to the hospital for five days of testing which still did not provide any clear answers.

However, when the Dr. met Kendall he knew what was effecting our girls, and it was a parent’s nightmare. After noticing some similar early symptoms in Kendall he said words I’ll never forget, “this changes everything.”  From that moment forward he knew of a specific test that he would do to confirm what he suspected, Niemann Pick Disease Type C.  Within a few weeks results came in, and devastatingly enough, positive for Brynne and even Kendall too.

We had never heard of Niemann Pick Type C but quickly learned it is a recessive genetic condition that mostly effects children. It can begin with early signs like an enlarged spleen or liver. Over time, other symptoms develop such as slurred speech, learning difficulties in school, loss of balance, forgetfulness and progresses until children lose the complete ability to walk, eat, and talk. Children with Niemann-Pick Type C very sadly experience dementia which gives it the nickname Childhood Alzheimer’s. Most terribly, it is fatal and causes death in childhood. There is no FDA approved treatment or cure. However, there is hope for Brynne and Kendall. 

To learn more about NPC go to http://fightnpc.com/en/

We have hope that we can save our little girls and need your help

There is a late stage experimental treatment in clinical trials that can help save Brynne and Kendall’s life. It appears to be working well to slow or stabilize the progression of the disease. It offers so much hope that Brynne and Kendall’s life may be saved for many years, and possibly much longer. Yet, it will be challenging. The girls will have to go to the hospital under anesthesia every two weeks to receive the treatment. The financial and emotional toll of this will be immense. We are anxiously and gratefully awaiting approval of our “compassionate use” application so our girls can get access to this life saving treatment.  

We have hope that we can save our little girls and need your help

Now with our girls having this fatal diagnosis our world has truly been shattered and we need help to pick up the pieces to be able to put life together and focus on giving the girls treatment. We know that we MUST do our part and everything that we can to treat these beautiful daughters of God with the evolving treatment that is available to us.  Our faith and hope is that the girls can have the best quality of life with the help of Doctors, and with the prayers, faith and support from those surrounding us.  We are desperate to get treatments started and know that this will be a considerable medical expense.  We are humbly asking for your help and cannot do this alone. We will be persistent to help find a cure and determined to help raise awareness through your help.  Please spread Brynne and Kendall’s story, every little bit will help. 

Thank you for taking time to read our story, may the Lord fill your hearts with comfort as he continues to do so for us.  We appreciate all your prayers, love and support.

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