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Help baby Olivia

$34,707 of $50,000 goal

Raised by 346 people in 4 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.

https://www.timescolonist.com/life/baby-olivia-s-horrible-genetic-lottery-1.23475590

https://www.cheknews.ca/victoria-baby-is-battling-a-disease-so-rare-fewer-than-50-cases-have-been-reported-worldwide-502344/

https://www.facebook.com/cheknews/videos/619258771823713/?__xts__[0]=68.ARBfbay9VngLDiaJlSHft-X9JharhTqiXxAodsoL41oJjKG48nOimAEdIPPfPLdhRBDU03M4uCoXOJMkUFT72YPQb5o6vyM5_dK722IxFH-3fGppa-evqAgN09kP2bDiDSMLn20f7Q4BiiZnb0drSOEws2lp02i3WWLueLnSQ1OpsNnVQjy2ePZHtnyQcr3vz2d8O3uYsTHFgalHas9acoVd6rnMHgJ5LHhBlpI&__tn__=-R 

https://tango2research.org

https://rarediseases.info.nih.gov/diseases/13423/tango2-related-metabolic-encephalopathy-and-arrhythmias

http://www.tango2.it/tango-2/

https://www.ncbi.nlm.nih.gov/books/NBK476443/  
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Olivia update

Our trip to visit Santa on Wednesday went well. Olivia managed to sleep through the entire photo shoot only to wake up after Jesse left the room. Out of the kindness of his heart Jesse came back to take more photos of Olivia awake with Santa. When we returned to the hospital after the shoot the team decided to see if Olivia could tolerate not turning her IV fluids back on. Little did we know that inside her body was brewing a metabolic crisis. By the evening her sugars dropped down low and she was pretty low energy. We reconnected her to the IV fluids, but the damage was already done. By early Thursday she started feeling unwell and spent almost all of Thursday sleeping, feeling grumpy and weak. The team ran a bunch of tests and determined that her body was becoming acidic. They immediately began treating her and brought her into PICU for close observation, and within 12hrs she was almost back to normal. She spent all of Friday in PICU and will spend part of today there also. She is still a little weak and tired, but regardless she is happy and playful. We are unsure of what caused this crisis, but there were some known factors that had contributed to it. Thankfully we caught this crisis early and were able to begin treatment before it got worse. With each crisis she has we learn more about her triggers and symptoms. Hopefully her experience can help the research team find a cure faster.

Thank you for all your love and support
❤️ Chris and Gloria ❤️
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Here are a few shots from our recent photo shoot with Jesse Hlady. Olivia got to meet Santa for the second time.
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Olivia update

Since our last update Olivia has been doing much better. She has come a long way over the last week. We switched her to a more broken down formula called neocate, and that seemed to make a huge difference. She no longer has a large build up of gas in her tummy and has tolerated a slow gradual increase in the volume of food she is receiving. She is still on a continuous 24hr feed, however we were recently able to take her off the TPN. We are also weaning her off of IV fluids and managed to successfully pause her IV for 3hrs today. Currently the only downsides to the new formula are a slightly overactive bowel and what the doctors think is acid reflux. Tomorrow we will be taking Olivia out of the hospital on a pass to meet Santa and get photos taken at Jesse Hlady's studio. Hopefully everything will go well. It's really encouraging to see how strong she is becoming and how healthy she looks now. Over the last week she has also become more interactive and vocal. She is learning alot and playing more. I don't want to jinx us with a positive post, but we are cautiously optimistic at her progress.

Thank you everyone for your love and support.

❤️ Chris and Gloria ❤️
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Olivia update

Since our last update it's been a difficult week. After I posted our last update, on the 18th we made an attempt at switching her feeds to bolus (a one time feed) from continuous. It did not go well. She ended up having another metabolic crisis. Her sugars crashed, her lactic acid spiked and she began vomiting. They temporarily removed her from feeds and switched to IV. She spent the night under close observation and by the next day they restarted her continuous feeds with her IV also running. She seemed to be getting better but something seemed off so I asked for more blood tests. Turns out they didn't run enough IV fluids through her for long enough and her lactic acid climbed higher. They upped her fluid intake and decreased her feed temporarily to balance her out. Once she became more stable we gradually increased her feeds. She was able get back to where she was on the weekend, only her digestive system slowed down and her gas build up had decreased. Things were beginning to look up. Her blood work was looking good on Thursday so they decided to just confirm on Friday that everything was continuing to get better. However, the tests done on Friday confirmed that she was just beginning to have another crisis (two in one week). They decreased her feeds to a minimal amount and hooked her back up to the TPN temporarily until they can run more tests. Hopefully soon we can figure out why she keeps having a crisis whenever food is reintroduced. The doctors and specialists are working together to figure out what is going on, and how to create a nutrition plan that will work for her. Unless there is a miracle it's looking like we will be spending Olivia's first birthday and Christmas in the hospital. We will find a way to make December a special month for our special little girl.

Thank you everyone for your love and support.

❤️ Chris and Gloria ❤️
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$34,707 of $50,000 goal

Raised by 346 people in 4 months
Created August 8, 2018
Team Olivia
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