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Help baby Olivia

$40,142 of $50,000 goal

Raised by 390 people in 10 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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Olivia update June 18th

On the 15th Olivia turned 18 months old, and as of today she has been in the hospital for 11 months. Since our last update Olivia had been feeling more tired and sore, however on the 15th she started to feel a little better. Every day she has been making slight improvements, and it shows in her playfulness. After we increased her IV fluids on the 11th we checked her blood work again that night. Her lactate had dropped to a third of what it was that morning, however her CK began climbing rapidly. By the evening of the 14th her CK reached 6,331, but thankfully the following morning it had started to come down to 6,095. Since then her CK had continued to rapidly drop and her lactate was starting to get close to normal. This morning her lactate is in the normal range and her CK is 593. On the 13th the professional firefighters of greater Victoria stopped by the hospital to drop off a donation to the Victoria hospitals foundation. While they were here they came up to the pediatric ward to visit all the children who could not come down to visit them. Olivia got to meet four firefighters and one of them she actually knew before she was hospitalized. On the 11th we met with a couple people from the hospital foundation to answer a few questions about Olivia. They will be sharing Olivia's story in an effort to help fundraise money for more life saving equipment for Victoria General Hospitals PICU and NICU. The campaign is called You are vital pediatrics. We will share that article when it gets posted.

Thank you for your love and support.
❤️ Chris, Gloria and Olivia ❤️
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Olivia update June 11th

Over the last week Olivia has seemed well. She was happy and playing lots, but had been having difficulties sleeping through the night. Since our last update her lactate has continued to climb. Although her lactate did come down a couple times over the week it ended up climbing back up higher afterwards. Aside from her lactate everything else in her blood work looked normal until a couple days ago when her CK started climbing. Because her body is not flushing out the lactate and CK We decided to increase her fluids and decrease her feeds. It appears that she might be having another crisis. This crisis presented much differently then her previous ones. One theory one of our doctors has is that when we made our last switch from TPN to D10NS (dextrose with sailine) the amount of sugar she was receiving had decreased too quickly. The doctor thinks that her body tried really hard to compensate for the decrease and as a side effect she made more lactate. If that is the cause then that makes perfect sense as to why her lactate slowly climbed over the week when the rest of her blood work looked normal. Yesterday her lactate came down a bit, and today it is holding steady while her CK is continuing to slowly climb. Over the last couple days she has begun to feel more tired and slightly uncomfortable. So far today she has been sleeping lots and is occasionally in pain. We will be running daily blood work until we know this crisis has passed.
On a more positive note... yesterday Olivia took her soother again and began to self soothe with it. She requires assistance to keep her soother in her mouth for long periods because her muscle strength and coordination are not quite good enough to do it on her own. In Olivia's case using her soother will actually help her rebuild her oral motor skills, strengthen the muscles she needs for language development, and help her overcome her oral aversion. As an added bonus her soother is giving her the ability to instantly calm herself down.
Today it feels like one small step forward with two steps backwards. Hopefully the cause of this crisis is what we think it is and that it will pass quickly.

Thank you for your continued love and support.
❤️ Chris, Gloria and Olivia ❤️
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Olivia update June 4th

Since we've been back in Victoria Olivia has been doing well. She is the happiest baby ever right now. She recovered fully from her last crisis so we started to wean her IV fluids. Her g-tube was leaking quite a bit so on May 29th we removed it for 3hrs to let the hole shrink down before putting a new one in. That same day we also managed to get her onto just her IV dextrose and started to wean it down. We ran blood work the morning of the 30th and found that her lactate was starting to climb and her body was becoming a little acidic. We made the decision to put her back on TPN that evening in order to reverse what was happening in her blood. By the 31st her blood work had stabilized again. Her doctor felt that maybe her body wasn't producing enough bicarb to keep her acids in control so we decided to try an experiment. She took the bicarb out of the TPN and put it in her feed then checked her blood work the next morning. Her blood work on June 1st remained unchanged, so we decided to carry on with our experiment to see where it goes. On the 2nd her blood work looked good except for her lactate which came up a little bit again. Right now she is on a continuous feed and some IV dextrose. Yesterday and today her blood work has been the same. Everything looks good except her lactate is still slowly climbing. We are not too sure why her lactate is continuing to climb while nothing else appears to be wrong. In usual Olivia fashion she keeps us guessing. Our plans to wean off her IV fluids are on hold as we watch her blood work closely to see if anything else comes up. Overall she seems well. She's happy, playful and she's regaining strength in her neck and torso. Today Olivia got to try out a new piece of rehab equipment called a Gazelle PS. It's a device that allows Olivia to stand upright. She lasted a solid 5 minutes in the standing position before she needed to lay back down. She seemed to enjoy being able to stand again. In 44 days we will have been in the hospital for 1 year. Hopefully Olivia will be well enough to come home before then, however we are not holding our breath on that one. For now we continue moving forward one day at a time.

Thank you for your love and support.
❤️ Chris, Gloria and Olivia ❤️
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Olivia update may 27th

The ambulance arrived just after 730am and by 8am we were on our way to the helicopter. We were notified on route that all the helicopters were sent off for emergency calls, so instead we got to fly in a small airplane. Olivia was quite excited to be in the ambulance and chatted up a storm during the trip to the airport. She enjoyed her plane ride and spent most of it flirting with the paramedic. We arrived back in Victoria around 11am and we're greeted by many familiar faces. The nurses had decorated Olivia's room with welcome home signs and banners. There's no place like home ❤️.

Thanks for the continued love and support.
❤️ Chris, Gloria and Olivia ❤️
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$40,142 of $50,000 goal

Raised by 390 people in 10 months
Created August 8, 2018
Team Olivia
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