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Help baby Olivia

$36,633 of $50,000 goal

Raised by 356 people in 6 months
Created August 8, 2018
Team Olivia
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.

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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. 

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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.

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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. 

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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.

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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.

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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
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A throw back to last year on Olivia's first Valentine's Day.
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Olivia update Feb 14

Tuesday evening Olivia was moved to PICU for closer monitoring. Her lactic acid is slowly returning to normal, however her CK continues to climb. She is starting to experience more fatigue and muscle weakness. When she is awake she has brief periods where she seems almost normal then she tires quickly and settles back to sleep. She is also struggling sometimes with excessive drool. She is now down to one antibiotic to treat her bacterial infection, but they are still running tests to determine whether her infection started in her iv port or her body. They were able to identify the bacteria as bacillus cereus, which is most commonly a food borne illness but it can also be transmitted other ways. We don't know yet how she caught the bug, and we may not be able to find out. There is still the potential of another visit to BCCH, but at this moment it is not necessary.

Thank you for your love and support.
❤️ Chris and Gloria ❤️
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Olivia update

We have unfortunately broken our longest crisis free streak. Last Thursday Olivia began to feel unwell. She was feeling fatigued so we decided to check her sugars only to find it was quite low. We were able to get her sugars more stable by putting her back on full IV fluids and reducing her feeds to a minimal. After some blood work we discovered that her lactic acid was quite high, so we ran her on more fluids and discontinued her feeds. We were optimistic when her labs started to normalize, so we decreased the fluids and restarted her feeds. However with a follow up test we found that her lactic acid was back up again, so we stopped the feeds and increased the fluids again. On Friday her labs were looking better and her sugars were stable. It seemed like she was on the recovery. She was getting more energy and was a little more playful, but her lab work that night told a whole nother story. This time her CK was starting to climb and her lactic acid was alternating between up and down. Since Friday night her CK has continued to steadily rise while her lactic acid remains low. Sunday morning she developed a fever and began leaking from her g-tube site. We had to switch out her old button for a new one, but unfortunately it was not the right size. On Monday her new button began leaking so we switched it out for a catheter, and it began leaking less. We have a new button of the right size on order, so until then she will be sporting her giant tube. They have been running a bunch of tests to try to eliminate possible causes of this crisis. So far they have discovered that she has a bacterial infection, but the strain is so far unknown. They are running further tests to determine the species we are dealing with, and we should find out within the next couple days. They started her on several different antibiotics to help speed along the recovery process. On top of all her troubles we found out after an abdominal ultrasound and an x-ray that her bladder was distended and she was holding onto most of her urine. She was retaining fluids and her bladder was so full that it was pushing her other organs out of the way and causing her alot of pain. Within an hour after inserting a catheter she had already let go of 300ml of urine (200ml of that was in the first 10 min). They think the problems with her g-tube were caused by her bladder pushing her stomach out of the way. So far the reason behind why she wouldn't empty her bladder is also unknown. We still haven't restarted her feeds, but we have increased the volume of TPN and decreased the other IV fluids she was getting. So far her sugars have been stable. Since the start of her antibiotics and the insertion of the catheter, she is having less frequent fevers, her resting heart rate has dropped to a more normal range and her pain is diminishing. She is starting to play, talk and smile more now. We are definitely not out of the woods yet, but it is reassuring to see her laughing again. This is another unfortunate set back on our road to home, but we will take it one day at a time. We will update you all once we learn what were dealing with.

Thanks again everyone for keeping up with us, and loving on us as we go through this journey.

❤️ Chris and Gloria ❤️
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$36,633 of $50,000 goal

Raised by 356 people in 6 months
Created August 8, 2018
Team Olivia
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