Meet AHC Champion Tanner (PA, USA)

Meet AHC Champion Tanner (PA, USA)

Meet AHC Champion Tanner (PA, USA) Newly Diagnosed

The following is a post on Facebook authored by Brittany Rosebrook (Tanner’s mom). Thank you for sharing with us!

AHC-Champion-Tanner-PA-USA-Story-6-2-15“…we traveled the all-too-familar journey back to CHOP today for a follow-up appointment with neurology, as well as to receive Tanner’s DNA sequencing results. Before I begin, I’d like to say thank you to all of you, for reading my continuous posts regarding Tanner, for sending us continuous well wishes and much needed prayers- like I always say, they mean the absolute world to us and we are forever grateful for you in our lives.

Growing up I always dreamed of being a Mommy. I was blessed in 2011 when a little brown haired, blue- eyed 1 year old boy came along with his Daddy, and enriched my life in so many indescribable ways. I married that boys Daddy, and we became quite a fun Three Musketeer package together.

Though it was supposed to be quite a long road to get there, we were so blessed to find out I was pregnant on New Years Eve. We bought cute outfits, fun toys, the perfect high chair, bouncer, swing, bassinet, etc. We moved into a bigger house with a bedroom just for that baby. We dreamed of what this baby was going to look like, who he would act like, I dreamed of how I would decorate his room, work on a sleep schedule, take him to friends and family’s houses and show him off, as the pride and joy that I so dreamed of. I dreamed of how he and Collin would become best friends, run around and play sports together, make each other laugh, and how amazing our lives would be as a family of 4.

Now before I continue, I would like to say that so much of that is happening, from laughing with Collin, to learning so much everyday, he is a dream come true, and I am beyond blessed to be his Mommy. We are an undefeatable, quirky, comical family of 4. I am quite the conductor of a crazy train, haha.

As you all know, since day 2 of his little life, our lives have been anything but typical. The hospital I had him at thought he was having seizures and transported us to another NICU that knew how to treat him better, when, at 6 months, we learned the evil name of “dystonia.” Anything I name you are obviously free to look up and research on your own, but I do ask you keep your findings to you, as we are and forever will be processing the research and information as well, and with many many many specialists therapists, etc. Tanner has severe dystonic episodes almost everyday now. He loses all control of every part of his body and becomes a rigid, screaming and writhing in pain, lost little soul who cannot break free from them until he either goes to sleep or is given a “rescue med” to help his body relax.

About a month ago, we learned that the big diagnosis for Tanner is called Alternating Hemiplegia of Childhood, also known as AHC. Last week we found out that the specific gene that is mutated on the AHC panel, Tanner is the ONLY person is the world with…my child has quickly gone from one in a million to one in 7 billion. Currently we are receiving amazing support from the folks of Cure AHC, who support us non-stop and understand our lives to the fullest extent. From this diagnosis, Tanner gets paralysis all day long, from one arm to two, one leg or two, full body paralysis, etc. He has both obstructive and central apnea, requiring oxygen and a pulse ox monitor while sleeping. Tanner has profound developmental delays, and receives physical therapy twice a week, occupational therapy and speech every week, nurses that come in at night so he can be closely monitored and Pete and I can sleep because some nights he will sleep one hour, sometimes dangerously low heart rates while sleeping, hiccups that choke him out and make him purple, requiring intervention, breath holding when upset that also makes him purple and requires intervention, meds four times a day, and the list goes on unfortunately.

Through this, we have learned to celebrate in every “little” thing Tanner does… I say that in quotes because Tanner is definitely progressing, just in what we call “Tanner Time.” I am proud to say that May is the first month since Tanner was 4 months old that we have NOT had to be admitted into the hospital!!!

So as you can read, our lives are not “typical” in any way. Many things cause Tanner to go into dystonic episodes, from being in the car, to fluorescent lights, being too hot/too cold, too happy/too upset, too tired, overstimulated, etc. We are home most of everyday, and I appreciate it so much when people come to visit us. For those few minutes to hours people are here, it feels “typical,” and sometimes I shed tears in how grateful I truly am for those moments because there are very few some days. I do not mean to sound like a martyr at all, but instead, I try to live very realistically. I have learned to sometimes shut off my emotion and sound more like a doctor or nurse than I ever wanted to be (thank you to all of you dr’s and nurses, like I always say though, it was never my “thing”. But instead, now it’s my every moment of everyday.) I have yet to learn to take time for me, or to mourn the loss of my dreams of how our lives were going to be. Tonight after being at CHOP, I have been doing that.

I am remembering how I wanted Tanner’s room to look all decorated so sweetly, though he has yet to even sleep in his own room because he’s downstairs with the nurses all night in a pack n play instead. I am remembering all the family trips we were going to take, yet some days he can’t go outside. I still see my one year old trying to run around the house and open cabinets he shouldn’t be in and get into stuff and make messes everywhere, when he has yet to be mobile in any way, at almost 10 months old. I should be upset he’s making messes, but instead, I’m having conversations with therapists as to what adaptive equipment we need to start getting for him. I could go on and on, but the reality is, Tanner is my world, Tanner is my dream come true, who came into this world with a bang and changed our lives forever.

Tanner is a very interactive, spunky, hilariously adorable little love who just wants to be cuddled and have it “Tanner’s Way” at all times….don’t worry, we already know we’re in trouble! Through it all, Tanner has already taught me so much, and is quite an “AHC Champion” in our eyes. For 9 months old, my littlest love has showed me what a real superhero is.

Though this will be quite a long road, full of many ups and downs, I am forever grateful for your continued support, love, prayers, calls, texts, and well wishes!”

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