Brinley’s Diagnosis
As many of you know, Brinley has had a lot of struggles since birth. We’ve been going from doctor to doctor looking for answers but with little success. Yesterday, July 10, we received a partial diagnosis of the underlying cause of many of her health problems.
Brinley has been diagnosed with Hypomyelination Syndrome. If the human brain were a big ball of electrical wires, myelin would be the sheath or protective coating around each wire. Myelin insures the message from the brain gets sent down the wire without interference. Yesterday’s MRI shows that Brinley has a profound lack of myelin, resulting in miscommunication in the central nervous system. This results in Brinley’s low muscle tone, erratic eye behavior, reflux, etc.
While we know Brinley’s myelin is very underdeveloped, we don’t necessarily know why. The most likely answer is a genetic mutation. The lab is currently running several tests and more samples will be taken on Monday for processing as well. We should hear some results within a few weeks.
The outlook for Brinley is not very promising. The disorder is most commonly degenerative and that seems to be the case with Brinley. Currently there’s no cure for her condition and, depending on the exact cause, we may only be able to treat the symptoms as they come. At best it sounds like we may be able to slow the degenerative process, but we’re still hopeful that somehow, somewhere, some way there’s a better answer. If there’s not a better answer, her body will likely slowly discontinue functioning. The reality is she may pass away due the disorder in the next weeks, months, or years. As you can imagine, we have a lot of unanswered questions.
For our immediate outlook, we plan on staying here at Primary Children’s Hospital until Tuesday. She still has a lot of tests to go through but she’s been such a trooper through it all. All the doctors and nurses says she’s so beautiful and perfect–in her own special way of course. We tend to agree. We love having her in our family. She’s so much fun and has been deeply ingrained into our lives and hearts. Thank you all for your hope and prayers. That’s all we could ask for.
July 11th, 2009 at 10:26 pm
Aaron and Holly,
It is sad to hear of your situation. Our prayers are with you and Holly and Brinley.
Love Bart and Hiroko
July 12th, 2009 at 7:09 am
Our hearts broke as we read this. Brinley is such a special little girl. Take care of yourselves, and know that all three of you will be in our prayers. Love, The Bakers
July 12th, 2009 at 7:14 am
Our thoughts and prayers are with you guys. We love you.
July 12th, 2009 at 9:02 am
Aaron & Holly, We are so sad to hear of this news. I know your hearts are breaking. We love you all so much. We are praying for you.
July 12th, 2009 at 4:49 pm
Aaron and Holly,
We are praying for you and hope they can find something to help your little one. Let us know if there is anything we can do!
Steve and Jaclyn Weist and Family
July 12th, 2009 at 6:20 pm
Hi Aaron and Holly,
I am so thankful that I got to meet Brinley at the reunion. I am so blessed to have been able to see her sweet smile. I Love you guys so much!
July 12th, 2009 at 8:07 pm
Aaron, Holly and Brinley, We are deeply saddened to hear the tough news. Our thoughts and our many prayers are with you all. God Bless.
July 12th, 2009 at 8:22 pm
Aaron & Holly,
We can’t even begin to imagine what you guys are going through. The 3 of you are in our prayers. Please, let us know what we can do to help. You guys are such great parents and Brinley is so so so beautiful, not only in her own special way but in all ways, she’s a darling little baby girl. Finn can’t wait to play with her soon.
Love, The Winegars
July 12th, 2009 at 8:24 pm
This must feel like a nightmare. I’ve been looking at Brinley’s pictures and watching the fireworks video over and over again. She is such a treasure. Your love will make her as strong as she can be. Hang in there.
Love you!
July 12th, 2009 at 9:12 pm
Aaron & Holly,
We can’t imagine what you guys are going through right now. Brinley is so beautiful, and special. You are in our prayers, and we think of you often. You are such great examples of hope and faith. Please let us know if there is anything we can do.
Love,
The Hawkins
July 12th, 2009 at 10:39 pm
We are sorry to hear about the sad news. You guys are a beautiful family and your love for one another was very evident at the reunion last weekend. We will be praying for you.
Love,
Derrek and Rilee
July 13th, 2009 at 10:26 am
Don’t those kinds of things happen to OTHER people? You can count on prayers from my family
July 13th, 2009 at 10:46 am
The whole situation is very difficult and touching. Thank you for putting that facts so plainly out there. It kind of puts the challenges we think we have in our lives into perspective. Prayers to you and your family.
July 13th, 2009 at 10:57 am
You have my prayers.
July 13th, 2009 at 11:50 am
Aaron and Holly,
My husband, Brian, is a friend of your dads! Mike sent Brian the email and link to this page! I am truly heartbroken! I have no idea how you must feel or what you are going through. Your family and Brinley~ is in our thoughts and prayers!
Love and prayers to your family from ours!
The Pinsons
July 13th, 2009 at 4:09 pm
Our thoughts and prayers are with you guys. If there is anything we can do to help you guys please let us know.
July 13th, 2009 at 9:13 pm
Aaron and Holly,
We were so saddened to hear the news about Brinley and can’t imagine the worry and uncertainty you are experiencing. We admire your optimism and faith. Keep smiling and enjoying every moment with her. Those giggles are infectious! Let us know if there is anything we can do. (I’ll miss you in primary!)
Keeping you in our daily thoughts and prayers,
Love, The Harringtons
July 13th, 2009 at 9:14 pm
You’re in my prayers Aaron and I hope the best for Brinley, your wife, and you.
Keep hanging in there!!
Richard
July 13th, 2009 at 10:24 pm
We are so saddened to hear this news about your little girl. Your family has had many trials. We will be praying for the Lord’s tender mercies on your behalf.
God Bless,
Gretchen and Mark
July 14th, 2009 at 10:43 am
Holly and Aaron,
I cried when I read your email. Our Heavenly Father must have some very special plans for Brinley. She has already touched so many lives. He also knows that the two of you are strong enough to handle whatever comes along and what special parents you are for Brinley. Our prayers and hopes are with you. Enjoy every moment you have with her. Families are Forever!!
Love ya!
Maxine and Family
July 16th, 2009 at 12:11 pm
Dear Holly and Aaron,
I did not realize that Brinley was sick until I ready your facebook status today, and I came straight here to read your post. I’m sitting here with tears streaming down my face and praying to God for your precious little girl! I can only imagine how you must be feeling right now, and I will continue to keep you all in prayer because God can and will still perform miracles as he did so many years ago. As the mother of a small child myself, my heart breaks for you, but I know that God can heal her. May God give you both the strength to handle whatever comes your way, and I know that Brinley is in God’s hands. I am going to add Brinley to our church prayer list and to my little boy’s prayer list every night. Sending you love and prayers…God bless you and comfort you!
Love,
Amanda, Duane, and Malachi Gibson
July 22nd, 2009 at 6:22 am
Dear Holly and Aaron: I had just returned from helping Heather and PJ move to Ohio, where he will be going to law school and decided to catch up on my emails. Maxine had forward this on to me and my heart is breaking. Hope the best for you, but as you know withour own lost of Nathan, we have to love them as much as we can and know that they are in the Lord’s hands. It is hard to acknowledge that it is the Lord’s will but you can. There is not a day that I do not think about Nathan and shed a tear or two. Please let me know if there is anything I can do. If your family has a special fast for Brinnley will you please let us know and I will gladly forward it on to all that you would love to partake. Please know that she will be in our family prayers morning and night. Love, Linda and Scott Baird
September 23rd, 2009 at 10:02 pm
I ran across this sight after looking for my dear friend Louise Merrell Fralie on facebook. I suffer from Multiple Sclerosis….Has the doctors ever mentioned MS to you as a diagnosis? Children can have it too.It sounds so much like MS with Brinnley’s mylin problem. Just a thought. Primary CHildren’s is such an awesome hospital.I am so glad you have had the chance to be there with your sick baby. I spent alot of time there with my youngest son Cooper. I love Louise so much,and I know that she is there with you in prayer, spirit and what ever you need. Take each day and make it the best. You have the best of the best from our Heavenly Father in your arms and in your home. Sincerely Marilyn Clawson