WHO IS HAYLEE?
Haylee Anne Machek Hynes was born on October 25, 2008 to Amanda and Greg. She was a much anticipated addition to an already happy family of five. Haylee is the youngest of four girls. It wasn’t long before Amanda, Haylee’s mom started to notice that Haylee was not reaching some of the physical milestones that most babies attain such as head control and any movement of
her arms and legs. She also was having some problems breathing. When Amanda expressed her concerns with her family doctor, she was told that Haylee was just lazy and that there was nothing to worry about. As the months progressed, Haylee was not showing any improvement when it came to head and body control, so Amanda decided to take Haylee to the Kinder Clinic in Oshawa. Dr. Dahman exmained her and was able to discern quite quickly that Haylee had something called “Floppy Baby Syndrome”. Dr Dahman told Amanda to take Haylee home, keep a very close eye on her and to bring her back the next day. He explained to Amanda that Haylee was a very sick little girl and he would be referring her to SickKidsHospital in Toronto. Many tests were ordered, as well as daily visits to the clinic-a close eye was kept on Haylee. On Sunday, April 5, 2009 Haylee stopped breathing, Amanda started CPR, Asha called 911 and Marta yelled for help. The neighbours arrived, then EMS arrived and took over.
Haylee had suffered cardiac arrest and was taken to Bowmanville, LakeridgeHealthCenter where it was decided that she would be airlifted to SickKidsHospital in Toronto. Once Haylee arrived at Sick Kids there was a medical team waiting for her. It was then that Haylee suffered her second cardiac arrest in a span of 24 hours. Haylee was intubated at this time. A quick baptism was held that night as no one was sure how much longer Haylee would hang on. On April 15, 2009 a PICC Line was inserted. A Peripherally Inserted Central Catheter, or "PICC line," is a thin, soft plastic tube, like an intravenous (IV) line,that allows the patient to receive medicines and fluids. A PICC line stays in place for as long as needed. On April 22, 2009 Haylee was diagnosed with Spinal Muculsar Atrophy Type One (SMA). SMA is a degenerative neurological disorder and the progression can be very rapid in young babies. The doctors stated that Haylee would probably not make it pass her first birthday.
The Pallitive Care Team thought it would be best to put Haylee into a coma and then pass away quietly in her mother’s arms. Amanda and Greg would not let this happen without a fight. Amanda started researching and contacted other parents with SMA children. The fight was on. During Amanda’s research and with talking to other parents she discovered a protocol that has been used in the United States by Dr. Boch. He has been using this protocol on SMA Type One patients since 1992 and has had some success with increased survival rates. Now the goal is to convince Haylee’s doctors to properly follow this protocol. On Wednesday, June 10, 2009 Haylee received her G-Tube and has been thriving since it went in. Haylee has a big beautiful blue eyes that reach right into your soul and she always has a smile for her visitors.
The fight that Haylee and her family are undertaking is emotionally, physically and mentally exhuasting. It has also drained their bank accounts and has left them without the ability to work full time. With three young girls back home and Haylee in SickKids for an undetermined amount of time, the financial strain is becoming too much to bear on top of everything else. For this reason we are fundraising to help Haylee and her family focus on what is important right now and remove the finacial burden from their minds.