Hello - my name is Angela Morash and I am a friend of Sarah's mom. Sarah's is a 12 year old girl who has been battling 8 different ailments both physical and mental, resulting in 14 surgeries and constant pain.

  As a mother myself, I can not even begin to imagine how this family has survived so far.  All I can say about the Conways is they are amazing, loving, patient and STRONG.  I met Sarah's mom about 12 years ago and watched this family go through their incredibly difficult journey until the present day and it will continue to last a lifetime. 

  Knowing that their journey has become a lot more difficult in the last year - I wanted to reach out and help them in some way.  As you read this story, I hope you will find it in your hearts to donate to this unbelieveable family and help them.  This family - even with all their suffering - still gives and contributes their time and love to others in need when they are well enough to do  so.  How incredible is that?  They are true angels on this earth and now it's our time to help them.  Here is their story....

Twelve years ago, a beautiful baby girl named Sarah Conway was born. Her parents loved her unconditionally but had no idea that their baby girl came into the world with a long list of medical and mental health problems. In her short 12 years of life – Sarah has gone through 14 surgeries, has been diagnosed with eight different disorders and will never have a regular childhood that we all wish for our children. Please continue to read if you want to know the in-depth story of her complicated life…

It all began when Sarah was born.  Like all newborns, she had her hearing tested at 2 days old only to find out that she was had mild hearing loss. It was a shock her to parents and led to Sarah needing hearing aids as soon as she was old enough to have them.  Since birth, Sarah's parents have paid over $8000 in expenses for her hearing aids, with only $1200 being covered by insurance.  Sarah is now needing her fourth pair currently at a cost of $2500.00 for the pair.  Her hearing impairment has worsened leaving Sarah with a severe impairment.  This means she has also had to go to speech therapy for the last 10 years in order to learn to deal with her hearing loss.

 When Sarah was born, her parents also noticed that she threw up a lot - more than the average baby. She would have to sleep in her car seat sitting up in order to keep formula down. Her parents were never able to lay her down flat for months as she would cry in pain and vomit. After some testing at the hospital, she was diagnosed with GERD (Gastro Esophageal Reflux Disease) and she had to be medicated to manage it. By the age of 6, her GERD was so severe that she was taking large doses of medication every day just to stop her from constantly vomiting. The doctors were not satisfied with the results of the medication and decided that Sarah would have to have surgery. Sarah had what is called a Nissen Fundoplication performed on her stomach. This would stop the acid from refluxing constantly into the esophagus and had a G-tube put into her stomach to help her eat. Sarah seemed to be doing well with this and 8 months after her surgery, she was able to have her G-tube removed.

 At 3 years old – Sarah’s parents noticed a different behavior starting with her. She needed to have things in certain orders, could only wear certain clothes without screaming, and could only eat with certain utensils, bowls and cups. Sarah had to be in bed at exactly 7pm, the toys lined up in a specific order. If anything in her routine was changed, Sarah could not control her emotions. Crying, screaming – she would become completely miserable. Going anywhere other than home – say to the store for instance – would cause severe panic. Sarah was afraid of everything imaginable – bathing, her parents leaving – especially her mom. Sometimes she would even become violent when her schedule was changed. Being 3 years old, she could not explain to her family why these things were bothering her. Sarah didn’t know how to handle the world around her, she didn’t feel things like others did physically. Sarah was constantly uncomfortable and didn’t know how to describe what was happening to her. Soon her parents took her to specialists for her this behavior and came to find out that along with GERD, Sarah also had Generalized Anxiety Disorder and Sensory Processing Disorder. Again more medication for Sarah daily to help her deal.

 At the age of 4, Sarah would cry every time she saw the sun or bright lights. Most of the time the lamps in the house could not be on. She wanted to be in the dark stating her head was in immense pain. After a few years of testing the doctors had figured out that she was having migraines on a regular basis – and more daily medications were required to control them.

 At 5 years old, Sarah went to the eye doctor as all young children do before starting school. After being looked at by the doctor – he said that the tests revealed that Sarah had a cupping in her option nerve. The eye doctor sent her to the IWK and her parents were told that she had Glaucoma. Sarah’s would have to be watched very carefully and having to take another daily medication to ensure the Glaucoma would not worsen and to keep her pressures under control.  This would ensure that her eyesight would not be affected.

 For the next couple of years everything seemed to be under control. Sarah continued to take all of her medications daily. She started school, made friends, tried to be as normal as every other kid. She had to continue her behavioral and speech therapies, but life was manageable and enjoyable for herself and her family.

 Then about a year ago, Sarah became very sick again. For days and weeks her throat would burn intensely. Sarah would cry in pain stating it was her stomach bothering her. At first her parents and doctors believed it was a viral infection. Then because of the length of time it had been bothering her – the doctors thought maybe she had a strep infection, but upon further investigation – the doctors informed Sarah and her family that they had bad news. It was what they had feared - it was her stomach and reflux disease back in full swing – medications were not helping and her surgery – the Nissen Fundoplication was not working properly.  In July 2013 Sarah had to have a surgery to put her G-tube back in.  After it was put in, the doctors were hoping that it would help with the pain and nausea.

  In August 2013, Sarah was admitted to the hospital with a high fever and extreme stomach pain. She was not responding at all to any of the medications they gave her for her GERD and the G-tube was not helping either. She was put into quarantine for five days so the doctors could rule out all bacterial infections. While in isolation - Sarah developed a stomach bleed and it took over a week for her to mend. Sarah and her parents stayed at the hospital until Sarah's fever left and the bleed had stopped. The doctors were not going to be able to fix the nausea and pain until they knew exactly what was happening. They sent Sarah home and she was expected to come back in whenever she had a major episode and for testing until the doctors could figure out what was causing these symptoms. Sometimes the hosptial visits were daily...

 After months of this going on the doctors did one final test. Sarah was hooked up to a feeding machine for 23 days straight – nothing to eat or drink by mouth at all. She didn’t have any pain or nausea.

The doctors eventually sat with the Conway’s and explained that the Nissen had loosened and it could not be fixed. Sarah will never be able to process food no matter what she eats or drinks, and will have to learn how to manage her condition. This meant that the GERD (acid) in Sarah’s stomach would continue to make her throat burn and she would need to be on new medications – several of them to control it.   As for her stomach and bowel – Sarah was diagnosed with Gastrointestinal Dysmotility – a type of Irritable Bowel Syndrome and Functional Abdominal Disorder, in addition to GERD. Again, medications are needed daily to help with this. The doctors wanted Sarah to stop eating food altogether and only use the G-tube to eat with a feeding machine. This means that Sarah would have to be on a feeding machine for 20 hours per day. Sarah’s parents have left it up to her when she wants to use the G-tube and feeding machine and when she wants to try and eat orally. Sarah is aware of what the food will do to her, knowing that just about everything she eats orally will continue to cause her intense pain and nausea.

 Sarah has also been diagnosed with chronic pain. She has to take pain medications 4 times a day to control the pain. She has good days and bad days with her pain and nausea. There are days when she can’t and won’t get out of bed because she feels too sick to her stomach. Then there are days when she is feeling so good but when she eats – the pain and nausea come back almost immediately.

 On top of everything that the Conway’s have gone through with Sarah, her father had also become injured two years and has been put off work.  His benefits will run out in September.  The family will be down to one income for the household. This family when they can, are the first ones to help out with others in need and now it’s our time – our community’s time to show them that people care and we are here to help.

 If you can find it in your hearts to donate – even if it’s only $5.00 – anything you can donate will help this family in some way.

If you live in the Halifax area, feel free to drop by on Saturday, September 20th, 2014 to Jenny's Place - 6211 Lady Hammond Road.  Starting at 6pm - we will be having an auction followed by a 90's dance party to help raise money for the Conway's.  Tickets can be purchased in advance for $10.00, or you can purchase tickets at the door for $12.00.

Advanced Systems has generously donated one of their DJ's as their contribution to play the music.  Jenny's Place has offered the space for us to hold the auction and dance.  Thank you to both companies for their generosity.

 Our goal is to try and raise about $10,000. This will pay for the new hearing aids that Sarah now requires, and also help with some of the expenses such as heat and power that will come with the winter months while the family is still under only one income.

Thank you for reading the Conway story and thank you for considering donating to such worthy family!

 Sincerely,

Angela Morash and the Conway’s.

Here are some links to Wikipedia of the different disorders that Sarah is affected by:

• http://en.wikipedia.org/wiki/Gastroesophageal_reflux_disease
• http://en.wikipedia.org/wiki/Hearing_loss
• http://en.wikipedia.org/wiki/Generalized_anxiety_disorder
• http://en.wikipedia.org/wiki/Sensory_processing_disorder
• http://en.wikipedia.org/wiki/Migraine
• http://en.wikipedia.org/wiki/Glaucoma
• http://en.wikipedia.org/wiki/Nissen_fundoplication
• http://en.wikipedia.org/wiki/Gastrointestinal_dysmotility
• http://en.wikipedia.org/wiki/Irritable_bowel_syndrome
• http://en.wikipedia.org/wiki/Chronic_pain