Please help our angel, Mari'am, fight GBS!

This is our beautiful daughter, Mari’am.  She’s 4 years old and was recently diagnosed with a very rare and crippling neurological disorder called Guillain-Barré syndrome (GBS).  This is a disease in which the body's immune system mistakenly attacks part of its peripheral nervous system and can lead to full paralysis and is often a life-threatening disorder.

Our Mari’am was  just like any other happy, healthy four year old girl – running, jumping, making forts, playing dress up and even wanted to take up makeup lessons! Mari’am was running, laughing, and playing with her baby sister one day and then started complaining that her joints hurt.  A few days before we called 911 Mari’am told her mom “Mama something is happening to me!”  Little did we know what that meant, but she at the tender age of 4 knew something was not right, but we had no clue what nightmare was yet to come in her fight with GBS!  The next day she was very tired and didn’t feel like eating and was struggling to drink fluids.  We called her doctor, and due to the current quarantine measures, had a teleconference with her family doctor and was ultimately prescribed a round of anti-biotics.  The next day she slept all afternoon and when she awoke she was very clingy with her mom and wouldn’t want her out of her sight.  We thought it was just another cold and will let her rest some more…well, the next day she woke and her mom took her to the bathroom around 6am when I was awoken with a big bang!  I rushed to the bathroom and saw my little girl, face down, sprawled on the ground.  She lost consciousness and fell off the toilet onto the floor!  We immediately called 911!  Mari’am had suffered full paralysis in about 48 hours and was initially sent to our local hospital before ultimately being admitted to SickKids (March 23).  She was assessed at Emerg @ the Hospital for SickKids that same evening and was admitted into the PICU/CCCU around 3am; here she stayed for about 2 weeks.  She was hooked up on a ventilator to help her breathe and within about 2 days she had a confirmed diagnoses of GBS; the spinal tap and MRI had further confirmed her symptoms and led us on to our fight with this disease. 

With the current quarantine situation we decided to bring Mari’am home and have been discharged from the hospital.  The challenge now is at home, as she still requires intensive in home therapy, in addition to therapeutic and mobile equipment to make her life a bit easier. She is not able to stand on her own, but can now sit up without support for about 30 minutes at a time and also has quite a bit of neuropathic pain, but is being managed with meds.

We are in dire need of therapeutic and mobile equipment for the home.   The cost for the equipment we need is beyond our reach. Please help us reach our goal so we can provide Mari’am the freedom of movement we all take for granted.  Some of the immediate items we need are a stander, a walker, a gait trainer, a commode, a bath chair and a specialized therapeutic tricycle, and the costs associated for a wheelchair rental and of course her physio care. 

Prior to the onset of this crippling nightmare of a disease, Mari’am was just like any other 4 year old; very active and playful, especially with her baby sister, who adores and still looks up to her big sister.  They are about 18 months apart and being apart for over a month at the hospital, her little sister Faatimah, who Mari’am affectionately  calls “baby” has been very depressed, unable to understand what is happening to her big sister. 

Please help us help her regain her mobility and freedom that every growing beautiful girl should have.