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.
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.
Although, we are extremely grateful to be so close to the hospital, and know things will go more smoothly as Loma Linda becomes more familiar with this procedure. Feeling grateful that Loma Linda was able to take them on, these sweet girls are loved wherever they go #hopeforbrynneandkendall #niemannpicktypec #lomalindauniversity
Loma Linda will be ready to start giving the girls treatments, June 7th will be the first time that it will be done there From here on out the girls will only need to go to Chicago every six months to a year. Huge blessing that Loma Linda moved so quickly, and for Rush to help get things done! Thank you all for the prayers, we feel it! #hopeforbrynneandkendall #niemannpicktypec #rushuniversitymedicalcenter #lomalindauniversity
We have wonderful news, Brynne and Kendall got their first treatment yesterday!!!! This is such a blessing that things have moved so quickly, the team at Rush in Chicago has been incredible and we know that with them and the prayers and support from all of you is the miracle that has helped us to get where we are now.
I live in Utah. I'm heartbroken for your family. I will donate something tomorrow. My husband and I also had two daughters. They developed a neurodegeneritive disease with seizures in their Late 20's. It's so heartbreaking to watch this process and not be able to stop it. Both of our daughters have passed away now. It's so hard to believe when something like this strikes twice. If you ever need any support.. please private message me on Facebook. We will pray for you daily. I'm so glad you found a hopeful treatment for your girls.
I have shared your story. I know what it is to have a daughter diagnosed with a profound disability and I have also tragically lost my youngest son Michael in an accident. I am praying for your family that you will have two huge miracles for your two precious girls. God bless you and your family ♡♡♡♡♡♡
Hi was at the fundraiser last night at Grizzly. It was a wonderful turnout. I hope that was a big help. Praying for the family. May God bless you all xxoo
What a beautiful family! I hope you get the amount you are asking, maybe more. Your girls are beautiful Good Luck
I'm so happy for your familyWhat exciting news for this miraculous miracle that is going to be in effect . I'm gonna be praying for your trip & all that goes along with it. God is perfect ! Thx for the update .
I have no words, may God Bless your family in any way possible!!
I am so sorry that this is happening just know that GOD will take care of it all I will be praying for yall thank you so much for sharing so sorry to hear this
Sorry to hear about your daughters, I don't have money to donate at the moment but I would like to share something, please research colloidal gold and coconut oil! you may have really good results with these products. All natural and has been shown to reverse the effects of this disease. Yahweh bless.
My heart breaks for your family, may God bless you and give you courage and peace...
Rush University Medical Center in Chicago has a little girl there that is getting treated for this. Go to Facebook page Hope For Marian.
Can you access organic cannabis oil? Thc and cbd oils?