Lil’ Miss Myleigh needs you

Dearest friends and family,

Our loving Crawford family could really use our help and support.

As most of you know, our beautiful 8 year old niece Myleigh and her loving parents Tyler and Brittany have been going through a very emotional and tough time these past few months. We would like to share their story.

On January 30th, Myleigh started off with mild headaches that quickly progressed from one a day to constant, excruciating and severe pain almost all day every day. She was waking up in the night in agony, waking up in the morning in agony, dizzy, no appetite, pale skin, dark circles under her eyes, vomiting and crying out in pain. She had quickly become quiet and withdrawn, which is incredibly out of this feisty, boisterous little being’s normal. Three trips to the E.R in a matter of a few short weeks left her family without answers and a very sick little girl. Myleigh’s mom Brittany would not accept the answers she was given, knowing something was seriously wrong and kept bringing her little girl to the E.R.

Finally, an E.R doctor put in a referral for our dear girl at the Urgent Pediatric Clinic here in Victoria. Myleigh was assessed and an emergency CT scan was ordered.

Two days later Myleigh’s parents were called & advised Myleigh would need to be admitted to the hospital within the hour. She was admitted at 2pm. By the time she was admitted into care, she had lost 7 pounds in 7 days, was very unsteady, her coordination was all over the map, her reflexes poor, and she was vomiting. At 7pmshe was sedated and given both an emergency MRI and a spinal tap.

Results came back with the diagnosis ADEM –Acute Disseminated Encephalomyelitis. Basically she had some sort of virus (we are not sure what she had because she wasn’t sick before the headaches) her body was fighting so hard that it started attacking her brain. The doctors told us that there was nothing that could have been done to prevent this or even catch it sooner. Myleigh was started on a course of IV steroids and kept in the hospital so she could be closely watched by her amazing physicians, nurses, and pediatric medical team. They were lucky to catch this when they did. If untreated to long it could have long term damage. Myleigh’s parents were told her full recovery process will be 7-8 weeks, at the least. 

5 long sleeps at the hospital and our girl was given the ok to go home, on Monday February 25th. The medication was working! She was sent home with steroid medication and told to take it easy. After her first diagnosis she ended up back at the E.R. and was admitted to Peds ICU with alarming high blood pressure and Kidney stones. After some pain management, she was sent home once again.

After 6 weeks on steroids at home, other than side effects from the medication, it seemed as though Myleigh was on the mend. Approx 7 days after she finished her steroid medication Myleigh’s headaches had returned and she lost vision in her left eye. She was admitted back to VGH for a one night stay, and sent by ambulance early the next morning to BC Children’s Hospital. A team of doctors and neurologists decided another MRI and spinal tap was necessary, and 2 new lesions were found on Myleigh’s brain. She was put back on IV steroid treatment and given a new drug called IVIG - IVIggives you antibodies that your bodyis not making on its own so you can fight infections.

Her previous diagnosis ADEM is said to only occur once in a lifetime. Therefore the doctors at BCCH now suspect Myleigh may have MS - Multiple Sclerosis. She has also tested positive for the JC virus - John Cunningham virus. They will be sending her to the UBC Hospital Medical Clinic to confirm their findings, and decide what course of treatment will be appropriate moving forward. We don’t 100% know what is going to happen moving forward, but the team of doctors at BC Children’s Hospital are doing everything they can to treat her symptoms and figure this out. 

These past few months have been both emotionally and financially taxing for this beautiful family. Brittany and Tyler both have missed work, staying home and in the hospital with her daughter throughout her unexpected sickness. The cost of loss wages, travel, ferries, food and accommodation have been accumulating.

Please help us raise a few bucks to cover the family’s lost wages and alleviate that stress during this super stressful time. The last thing they should be worrying about is financials. This family is not one to ask for help and so therefore we are asking for them. Thank you so much for your consideration, everything helps.

BIG love, aunty Sarah and Monique, Myleigh and family.