The latest update on our girls brings yet more difficult and devastating news.
The New Year has brought some different and quite major challenges for both our superhero girls. Savannah is adapting to a new addition to her medical machines at home, and Seattle is going to be having not one but two major surgeries in the coming months.
This time last year Savannah was having pulmonary difficulties and dealt with a brutal respiratory infection, resulting in daily oxygen therapy being added to her routine. Now her Mitochondrial Disease is causing hypotension and tachycardia, severe enough to result in the last hospitalisation. After leaving hospital Savannah and her mum went on a round trip to see her dream team of specialists to see what could be done to help deal with this. So Savannah now has a new machine added to her arsenal in the form of a pump that attaches to the newly inserted Nasogastric tube or NG tube. Hopefully the NG tube will help keep her fluids up and also help keep her nutritionally well. This is the least drastic, non-surgical option available and hopefully it will do the job.
Unfortunately the update on Seattle isn’t a non-surgical one. The MRI that she was having in preparation for the already brutal 6-8 hour surgery of total reconstruction of her legs revealed that she now also needs brain surgery. A Chiari malformation, where the cerebellum part of the brain extends past the base of the skull, was discovered and would explain the constant headaches she has been having. This additional surgery involves removing bone at the base of the skull, add that to the leg surgeries and Seattle is facing a tremendously tough time right now.
Before the MRI and results were known she drew a picture of her mom, her sister and herself. Written near her mum it said 'I wish nothing but the best for mommy.' Near her sister it said 'I wish I had a big stuffed Dora.' And for herself it was 'I wish I was not sick.'
Your continued support, thoughts and prayers are much appreciated through these difficult and demanding times. Any donation is gratefully received as the challenges this year has brought already and will continue to bring take their financial toll on the families.
To get updates, news and more information on Savannah check out her Facebook page at
And for the latest on Seattle and any updates please check out her Facebook page at
Savannah and her NG tube and equipment
Before the news of surgery number 2
Seattle's greatest wish
I wish I were writing with better news regarding our little warriors but once again, that is not the case.
While Savannah is now home from hospital there are still a lot of unanswered questions and many concerns regarding her health. She is having a hard time with basic autonomic functions causing dangerous swings between very low body temperature and then fever. Her blood pressure keeps dropping causing tachycardia which then creates blurred/double vision. Right now she is spending a lot of time in doctor offices while everyone tries their best to keep her from another hospitalization.
There has also been new developments with Seattle.
The moment that we have all been dreading has finally come. Seattle needs surgery. Major surgery that will take her at least a year to recover from.
Her surgery will be a complete reconstruction of both legs plus reconstruction of her left foot/ankle and maybe her right as well. It will be a 6 to 8 hour surgery and for the first two months she will have casts up to her knees with screws sticking out of them with braces on top. Braces will also cover from just above her knees to her hips. She will be immobile and confined to a specialized reclining wheelchair.
Because her case is so specialized, she will need to do her post surgery physical therapy in Portland for two to four months. This means she won't be able to go to school. Her mom will have to rent a place for the two of them to live in Portland, meaning they will be a 12 hour bus ride from Seattle's father, 9 year old brother and 2 year old sister. This news has shocked Seattle's family, who thought the surgeries would be less invasive and not for a few more years. This is an excerpt from Seattle's mom FB page-
'There are still so many questions that I have no idea how to answer at the moment. What's going to happen with my 9 year old son and 2 year old daughter? Maddox may be able to handle being away from me for that long but Harlow sure won't; she can come with me but how do I chase a toddler and help Seattle at the same time? Family can make the trips down with the kids to visit but that's still pretty hard on everyone to make the two day trip down. But I guess that kind of stuff can be worked out. The hardest thing to deal with right now is that Seattle really doesn't understand what's going to happen. She was in the room when her team told us the plan and I am talking to her about it as well, trying to prepare her. Yesterday at school, she finally released her emotions and she burst into tears and told me she was scared, that she felt like she couldn't breathe. Holding my sobbing baby girl in the hallway while a crowd around us stared is hopefully a memory that vanishes soon because it was truly awful.'
Please continue to hold these girls and their families in your thoughts and prayers. If anyone, has any information about places to stay close to Shriners hospital or public transit in Portland please let us know!
Thank you for your continued concern and support. It means everything to these two special families.
To read more about Seattle's journey go to https://www.facebook.com/seattlesmomma4transversemyelitis?ref=br_tf
For Savannah's- https://www.facebook.com/pages/Saving-Savannah/118859238127327
Please note - All donations will be split equally between the two girls.
Seattle in her new night brace
Savannah at another doctor appointment
Good news! While we don't have any answers yet as to why she became so ill, she is definitely starting to recover. Yesterday she was able to leave her bed for the first time since she was admitted and today THIS!
Go Savannah go!
Thanks to all for the kind words of support and generous contributions. We are very grateful!
I am sad to report that Savannah is currently in hospital. She was admitted a few days ago as her heart was in v-tach with a sustained rate in the 200's and spikes into the 300's.
Although I don't know all of the details I do know this:
-Her family spent a terrifying night with her at the hospital where she alarmed EIGHT times.
-We could have lost Savannah that night
-Lack of awareness about Mitochondrial Disease by the doctors assigned to her contributed to that.
-Due to a rampant flu, visitors under 18 are not allowed at the hospital so Savannah's siblings are unable to visit her and their mother .
-Hefty medical bills are piling up.
I will continue to update you all on Savannah's status as we learn more. She is undergoing a lot of tests at the moment as they try to figure out what is happening within her little body.
Please hold Savannah and her family in your thoughts and prayers and they navigate this tough road.
And please continue to learn more and spread the word about Mitochondrial Disease and Transverse Myelitis. Lives depend upon it!
Thank you so much.
(Please note-for the time being, all donations will go to Savannah to help pay for her current hospital stay)
Savannah and Seattle update
Our wee warriors are having a difficult time at the moment.
Savannah has been having trouble with mucus in her lungs for months now. She often suffers from bronchitis but this last bout has everyone quite concerned. Despite her doctors' best efforts, nothing seems to be working. She's tried three different oral antibiotics but none of them helped. She is going to try an inhaled antibiotic next. If she doesn't improve soon she will need to be hospitalized.
Seattle recently visited The Shriners Hospital in Portland and although she received the great news that her surgeries may be able to be postponed until she is 8, she also found out that her scoliosis has progressed at an alarmingly rapid rate; the curve in her spine went up 7% in less than 6 months! Also, her doctors told her parents that when Seattle walks it feels as though she is walking through chest high water. And the new leg braces she requires will make it feel as though she is walking through chest high water while wearing ski boots. Most worrisome is the untreatable pain Seattle is now experiencing. She has been waking up screaming in pain but nobody knows how to help her.
Please keep our little warriors in your hearts, minds and prayers while they battle their way back to good health.
Thank you so much for donating to The Battle For Savannah And Seattle! We all appreciate your help so much!
If you are using a credit card and experience any problems please contact firstname.lastname@example.org and they will help you out. I promise!
Please remember that no donation is too small. We've had 8,381 visits to this page. If every visitor donated just $1.00 we would reach our goal in no time.
Happy New Year!!!
Happy New Year everyone from Savannah and Seattle!
Thank you for your generous support and please have a very Merry Christmas! With love from Savannah and Seattle
I need your help!
Can you help me get the girls invited to The Ellen DeGeneres Show?
Why The Ellen Show?
Well the girls have never met and probably never will as they live in different countries more than 4000km apart. Wouldn't The Ellen DeGeneres Show be the perfect place for them and their mothers to meet? Living with a debilitating illness like this can make you feel so alone. Wouldn't it be wonderful for these little girls to meet someone else that is so bravely fighting a battle just like their own?
The show would also bring desperately needed awareness to the girls' very rare medical conditions. There needs to be more awareness out there about Mito and TM if we ever hope to find cures. Many doctors have never even heard of Transverse Myelitis it is so rare! And because the diseases are so unknown many therapies and medications are not yet covered for those fighting them.
This is how you can help- Do you have a Twitter account? If you do PLEASE send a Tweet to The Ellen DeGeneres Show and ask her if she would invite the girls to be on it so they can meet face to face. If you don't have a Twitter account then you could FB her or leave a message on her website.
Contact Ellen @TheEllenShow and reference this page http://www.gofundme.com/5dy7dw
Thank you so much!!
Love and Blessings
Thank you Mary McDonnell for spreading the word about The Battle for Savannah and Seattle on the Home and Family Show!
We now have a Twitter account! Please follow us @SavannahSeattle for all the latest announcements and updates on the girls!
Just some quick housekeeping notes-
I wanted to post again that Kevin Hawryluk is my husband and that the money is going into his Pay Pal account.
Also, the page is set up in Canadian dollars.
And if you experienced a problem using your credit card to donate the issue has now been be rectified. If you continue to have difficulty please shoot me an email.
Thanks so much!
Quick update here on an amazing first week...
In just 7 days we have raised $5,907 - almost 30% of our goal! Thank you again to everyone who has donated.
And a big thanks for the 1,400 Facebook shares and 170 tweets! As a result, the fundraiser caught the eye of The Mail Online and they published a story a couple of days ago. Yesterday we found out 2 more major news media sites want to cover the story as well! Stay tuned for more details on that front... But wait, there's more!!
This morning Mary McDonnell told me that she will be sharing the girls' story on the Home and Family show on the Hallmark channel this coming Monday. Please be sure to tune in! Thank you so much Mary!
I hope you are feeling the holiday magic you've helped create, and that your hearts are full. Mine is bursting with all of the gratitude I feel for each and every one of you.
Together, I know we can reach and even surpass our goal of $20,000.
I wanted to send out a huge thank you to all the fabulous people who generously donated to Savannah and Seattle this weekend. We raised $1,143! I know there's still a long way to go, but we are off to a GREAT start!
I'd like to send out a special thanks to The Kamloops Branch of Westcan Bulk Transport. They collected $368 to donate to Seattle and Savannah at their Christmas party last night! What a wonderful thing to do! I am humbled by your generosity for two little girls most of you have never met.
Thank you so much everyone. Sending love and light your way and hoping we can keep the momentum going so we can set Savannah up with her oxygen tanks and get Seattle into some physical therapy sessions before Christmas.
Meet two little super hero girls who have never met one another yet share so much in common.
Shortly after their first birthdays both Savannah and Seattle were diagnosed with rare, incurable, life threatening disorders, Savannah with Mitochondrial Disease and Seattle with Transverse Myelitis.
They both spent a long, terrifying time in Intensive Care and their prognoses were dire. If they survived at all, it was doubtful they would ever be able to talk, walk or function on their own.
But both of these girls are fighters with fierce, unstoppable determination and with the love and faithfulness of their families they both beat the odds and slowly started to recover.
Despite being told they would never walk or speak again they proved their doctors wrong. Seattle's incessant chant of "I walk, I walk, I walk, I walk" eventually became a reality. And Savannah's running commentary of her day, as well as the daily shenanigans of her imaginary friends, was music to her parents' ears.
Both girls are now 5 years old. They radiate joy and inspire all that get to know them. But their fight is FAR from over. And they need your help.
Mitochondrial disease is a debilitating medical condition most people
have never heard of, but one that can dramatically shorten a child's
Mito reeks all sorts of havoc with Savannah's system. Amongst other things, she suffers from chronic bronchitis and fatigue. She uses oxygen at night while she sleeps, which has proven incredibly beneficial, but her doctors would like her to use portable oxygen tanks during the day. They believe this could help increase her energy level.
The tiny O2 tanks come with a hefty price tag. She needs $2000.00 dollars just to get started. Then the tanks will need to be filled regularly.
Seattle, desperately needs a new wheelchair.
After becoming paralyzed within a few hours of falling ill, its incredible that she is now able to walk. But walk she does! She dances whenever possible and even RAN in a charity event at her school a few months ago. But despite her best efforts sometimes she needs a little help. Her school is on a hill and she just can't make the steep climb on her own. She has a wheelchair but she's a growing girl and requires a new one that will better suit her specific needs. A new chair is going to cost at least $4000.00 and eventually she will grow out of it and need another one.
In addition to the wheelchair Seattle needs funds for therapies. So little is known about Transverse Myelitis that no one knows how to fully treat her. What we do know is that this little warrior is in for a lifetime of surgeries on her legs, feet and most likely her spine as well.
Please donate and help Savannah breathe a little easier and fight off deadly infections and help Seattle get the mobility she so desperately wants and the therapies she desperately needs. Please help us give these warrior Supergirls the future they deserve.
-AND NOW FOR THE GRAND FINALE-
An inspiring video of Seattle DANCING to Pink 's song Try! http://youtu.be/IK3e38I6-rI
And some fabulous photos of Savannah dressed up as her favorite female tv heroines. Warning- Battlestar Galactica/Mary McDonnell fans prepare yourselves for the cuteness overload. http://greenawaltfamilylife.blogspot.ca/2013/09/mini-mary-mito-awareness-more.html
To learn more about Savannah, Mitochondrial Disease, her brother's battle with brain cancer and her family's daily adventures please like her facebook page or follow her mom on Twitter:
For more info on Transverse Myelitis, or to follow Seattle's daily adventures and to track her progress with her upcoming surgeries please like her Facebook page or follow her mom on Twitter:
I also encourage you to read this beautiful article written by Seattle's mother - http://mytm.ca/wp-content/uploads/2013/08/Summer-2013-newsletter.pdf
* all donations will be split 50/50 between Savannah and Seattle. Our goal is $10,000 for each Supergal.