Olivia has a progressive, palliative genetic/biochemical disorder (tango2 gene deletion). She has failure to thrive requiring enteral tube feeding, epilepsy, and repeated episodes of metabolic crisis. She has been admitted to hospital for the past month. The expectation with this condition is that Olivia will experience progressive neurologic + physical deterioration and will need increasing levels of support (cardio/respiratory).
We met back in 2006 and knew almost immediately that we wanted to get married and start a family. We married in the summer of 2013, and a couple years later we were ready to start trying to expand our family.
After a difficult and emotional year of struggling to conceive we were blessed with the news that we were expecting our little one. Olivia Joan Elizabeth McDonald joined our family on December 15 of 2017. Our beautiful baby was healthy and happy. ￼
As the months passed she surpassed her physical and psychological milestones, but her body wasn't keeping up. She continued to grow tall but wasn't gaining weight. We had constant visits with the public health nurses and doctors to monitor her weight gain. She maintained a positive attitude and was always super energetic. Everyone assumed she just had a high metabolism because physically it appeared nothing was wrong.
On July 18th 2018 our nightmares came true. Olivia wouldn't wake up from her nap and started vomiting and was unresponsive. She was rushed off to the hospital by ambulance. Doctors were stumped as to what happened to her. Her blood sugar was dangerously low, she had high levels of lactic acid, and high levels of CK in her body. ￼
They kept her sedated for a couple days and she ended up on a respirator. After spending a week in the PICU at Vic general the doctors had an assumption as to what it was but we're waiting on genetic testing to come back. She was making a great recovery and it was looking like we were out of the woods then on July 24th we found out her CK climbed much higher then it had been before, so we were informed that we would be sent to BC children's hospital the following morning on the first helicopter out.
Our visit to BCCH was full of ups and downs, many tests and appointments, and lots of specialists working to help her. She became stable and made lots of improvements and we were within days of coming home when we found out that she has a rare genetic disease called Tango2 (Tango2 related metabolic encephalopathy and arrhythmia).
Olivia was recovering well and stable so they sent us home August 3rd, and in less than 24hrs she began to have another metabolic episode. She was hyperventilating, vomiting and was not very responsive. So again we find ourselves at Vic General, where we wait with her as she makes her recovery.
Both Chris and I are off work until further notice so we can be here for Olivia. We are setting up this GoFundMe campaign to support Olivia and her treatments for the next few months. Any help would be greatly appreciated, especially since at this moment our future is unknown. ￼
If you would like to know more about the disease I have shared some links below.
Times Colonist Article on Olivia https://goo.gl/rdhEdK
Chek News Spot on Olivia https://goo.gl/QPoaMb
Chek News Follow up on Olivia https://goo.gl/V3NNVk
Tango 2 Research Foundation https://goo.gl/JvWPaE
Rare Diseases info on tango 2 https://goo.gl/CVJRx9
More info on tango 2 https://goo.gl/K5e59G
More info on tango 2 https://goo.gl/Eb52ZG
Santa Photos 2018 https://goo.gl/3uXw99