Today is Savannah’s eleventh birthday. I’ve been wanting to write an update on Savannah for some time. Many of our readers who come here looking for travel advice are, as yet, unfamiliar with our story and many who follow our Saving Savannah Facebook page message periodically to ask for updates on how she is doing.
So much of what motivates me with Mom Abroad comes from this important part of our history. A great deal of that history is documented on Saving Savannah and our old personal blog Greenawalt Family Life but for anyone who is finding us for the first time I’ll give you the quick “Cliff Notes” version of our story…
Our son Sebastian was diagnosed with Osteoclastoma in 2008, when he was just three years old. He fought these bone tumors —a golf-ball-sized one in his skull that intertwined with his brain and another in his right arm —like a warrior. After five years of treatments, surgeries and scans we are blessed beyond measure to be able to say he’s been tumor free and fully in remission for the better part of a decade now. I had my own fight with seven rounds of stubborn skin cancer, the first diagnosis at age 28, but I have also made a remarkable and full recovery. Those battles were brutal to be sure but the greatest challenge of all is the hand our youngest daughter was dealt.
Savannah was born in 2008 the same year our son was diagnosed. She was sick almost from the get-go and what doctors call “failure to thrive” but with no clear, immediate answers as to why. After what seemed like every test under the sun she was diagnosed shortly before her first birthday with a genetic and most often progressive disorder called Mitochondrial Disease. In the coming years we also learned that she has primary immunodeficiency disease. Specifically, she has Hypogammaglobulinemia (try saying that three times fast!) and what’s called Specific Antibody Deficiency or SAD. What this means is that her body has extremely low serum immunoglobins and lacks the ability to produce protective IgG molecules against the types of organisms that cause infections. For example, her body can’t retain any antibodies from immunization with vaccines…that’s actually one of the ways we learned that she has SAD in the first place.
Through the years Savannah dealt with one relentless infection after another. We’re talking two sets of ear tubes by the time she was a year old for ear infections alone. Five hospitalizations for pneumonia and lung infections that lasted over six months. If it wasn’t bacteria that was kicking her butt it was viruses taking her down. The common cold for example landed her in the hospital for two weeks of tachycardia brought on by fever. A few years ago, she was also diagnosed with Ulcerative Colitis after years of gastrointestinal bleeding. A lot of her days looked like this…
When Savannah’s birthday comes around every year, I get particularly emotional because, well, we were told not to expect many of them. We had doctors who told us she would never walk or talk but with intensive therapy and in her own time…she did. We had doctors who told us she wouldn’t see seven years old…but she did. And we had doctors that delivered the crushing statistic that most patients with Mitochondrial Disease won’t live to see their teenage years. At eleven we are not quite at that prognosis, but my heart has already dismissed it aside anyway because I believe…she will.
Mitochondrial Disease has no cure and no specific treatment but the good news I held tight to is that Primary Immunodeficiency does…Immunoglobulin Replacement Therapy. The process of getting on that therapy proved to be very difficult to begin and harder still to stay on but we have fought long and we have fought hard to get Savannah on treatment because we knew in our bones it would change her life for the better.
And boy has it ever. More than we could ever hope for.
We never could truly realize the extent to which Savannah is affected by immunodeficiency until we were finally able to get her on treatment for it and stay ahead of these infections.
You see, Mitochondria are responsible for producing over 90% of the energy the human body needs to sustain life. When these tiny “powerhouses” fail, less and less energy is generated, and cells stop performing and start to die. As this process repeats itself throughout the body whole systems begin to fail and the life of the person in whom this is happening is severely compromised. We saw this happening with Savannah particularly when her body was stressed from an infection. It was like a downward spiral that she never got a chance to recover from. Once she started immunoglobulin replacement therapy her body wasn’t in a constant state of crisis that taxed her mitochondria to the max. For the first time it could catch a break…regulate…stabilize…grow…Thrive!
I honestly don’t know which disease process is predominant or whether she has mitochondrial dysfunction because she has primary immune deficiency or whether she has immune deficiency because she has Mitochondrial Disease all we know is that getting her on immunoglobulin has been the single best thing we’ve ever done for her and nothing short of MIRACULOUS!
So, what is immunoglobulin therapy?
The term “immunoglubulin” refers to the fraction of blood plasma that contains immunoglubulins, or antibodies. It is prepared from the plasma collected from a large number of donors, usually between 10,000-50,000 people, who have been carefully screened to make sure they are healthy and don’t harbor any infectious diseases. This meticulous and complex process alone makes the therapy difficult to produce and therefore equally meticulous and complex hoops have to be jumped through to establish qualification in order for insurance companies to cover it.
The plasma collected from donors contains a broad range of specific antibodies to many different types of bacteria and viruses. Essentially what happens is that each week Savannah receives a transfusion of these antibodies that come from plasma donors in the form of this immunoglobulin.
The immunoglobulin that Savannah gets partly replaces what her body should be making, but it does not stimulate her own immune system to make more on its own. Since immunoglobulin only replaces the missing end-product but does not correct the defect in antibody production the replacement therapy is necessary for her lifetime. In addition, the immunoglobulin only provides temporary protection. Most antibodies are used up or “metabolized” by the body and must be constantly replenished. Hence why Savannah needs to repeat this whole infusion process every week. It really is a lot to endure but it is 100% worth it.
First, Savannah made it a few months without being in the hospital, and then six, and before we knew it, she had made it a year! We were able to move her infusions to our home. This meant she no longer had to sit for hours on end in a sterile clinic meant for adults devoid of any kind of entertainment. If you followed Savannah’s dress-up adventures, then you know we made our own fun at the clinic, but nothing compares to the comfort of home and flexibility of having her own dedicated nurse. In short what she got from her treatment was stability and freedom and control.
Our girl has always been brave but boy you should see how badass she’s become being able to insert the needles into herself and prime her own pump. These infusions are not easy, and they never will be but I could not be any prouder of the grace with which she handles it.
She has more determination in her pinkie than most people can muster in a lifetime. Missing a ton of school meant that she had some catching up to do but she didn’t let that stop her either. She went from being behind and needing extra tutoring to scoring top marks on her statewide standardized “End of Grade” testing. Sister missed only ONE single question this year! She stared in her first musical locally and started learning to play guitar and ballroom dance and ride a bike. She was able to come off needing oxygen 24/7 and relied less on her wheelchair now only using it for long distances or days that involve a lot of walking.
But it wasn’t only Savannah’s life that improved. Our whole family has had more time and space to pursue our passions. More time for making memories and experiencing the great big world beyond the hospital walls. For me that meant starting Mom Abroad because I know how important time spent making memories and seeing the world together can be. The deep truth I learned all these years is that our days are precious not promised and that our time and energy should be focused on what’s truly important.
For us this also meant selling our giant house and downsizing our square footage and with it our mortgage to free up more money to travel. We traded “stuff” for experiences at every opportunity. Christmas morning has meant unwrapping an itinerary instead of new toys or gadgets. My husband let go of a powerful job that kept him away from us far too much and started another that offers a better work life balance. I could go on and on about all the life changes these last few years have brought about but getting back to Savannah…
My favorite thing to do leading up to birthdays is look back at photos from the previous year or two and seeing how much the kids have changed. What I see overwhelmingly in this season is an abundant joy. In image after image of Savannah in particular I see a testament to what it means to seize life and live the hell out of it. I’m filling this post with some of these images that make me smile from ear to ear…just like she does.
Whether it’s zip-lining in Mexico or biking across the Golden Gate Bridge or climbing to the crown of the Statue of Liberty she’s been CELEBRATING life every single day. In every single new experience. In every single challenge met.
Today I delight in celebrating Savannah. Her remarkable past, her blessed present and her limitless future. Her growth and achievements. Her strength and her courage. Today I CELEBRATE eleven years of having this smart, funny tenacious and ever so lovely young lady in our life and cheer with hope for many more birthdays to come.
I want to invite YOU to celebrate Savannah with us today too… by giving the gift of LIFE by donating blood in her honor. More specifically, please donate plasma. Plasma is the clear straw-colored liquid portion of blood that is the critical material for producing the immunoglobulin treatment that’s completely turned her life around.
As I mentioned above it takes THOUSANDS of donors to pool enough antibodies to make a single lot of immunoglobulin and supplies right now are critically low. Sixty percent of the US population is eligible to give blood and less than five percent do. Every year it takes 130 plasma donors to treat just one person with primary immunodeficiency. Please be one of those people for Savannah.
Kids like Savannah live because people like you donate the antibodies you can make but they can’t! The average donation takes just over an hour and often plasma donation centers will even pay you for your donation up to about $400 a month!
The more people that give plasma the greater the supply of immunoglobulin available. The greater the supply available the less people get denied by insurance and the easier it is to access treatment.