make emily smile
Organized by: Emily Smile
January 23, 2017
Emily Lynn Glennon, is a 3-year-old little girl, who resides in Parker Township, armstrong County, Pennsylvania, with her mother Alisha, her father Tony, and her big brother Billy cash.
Emily is a very special little girl, who has a very difficult story to tell, however, she is not able to tell you her and her family's story, because Emily has Spastic Quadriplegia Cerebral Palsy and is considered non-verbal. (Spastic quadriplegia is the most severe form of cerebral palsy, affecting all four limbs)
Emily's mother, Alisha was kind enough to share her story with me and I would like to share that same story with you. It is my sincerest hope that you will take the time to read this story, and be as touched as I was, and want to help make Emily and her family's lives just a little brighter.
Emily's Story (as told by her mother, Alisha):
“When I was pregnant my body wouldn’t hold the amniotic fluid that the baby needed to move around. So she wasn’t able to move around very much in there and they could never tell me the sex at any ultrasounds. Each time I had an ultrasound the technician would be so quiet and every time they would call a doctor in to take a look and every time they would put me on a NST (no stress test) to see if the baby's heart rate was ok.
She would have dips and the one time they kept me, they told me things weren’t looking good and they would maybe have to take the baby at 24 wks. which they said it wouldn’t survive and they would send in a team and let me hold the baby as it passed away. I was scared and just sick about what had just been said to me, but thank the lord she stayed in there for a little while longer.” …every ultra sound resulted in me being admitted to the hospital. the final ultra sound they had told me i would be staying until i had the baby. i was two hours away from my family and missing my son like crazy.
“when emily was born i was alone and scared! i has serious pains and called the nurse, the doctor came and checked me out and said everything seemed to be ok(meanwhile i was screaming in pain to the point they took me into a different room so i wouldnt scare the other mom to be's) while in the room i was hooked to machines and emilys heart rate dropped. they told me i was to have a emergency c-section at 29 wks. When she came out I heard no cry, they said it’s a girl and I asked if she was ok and got no answer, so my heart started to sink. They rushed to put her on a breathing machine and after she was incubated they took me down to look at her for the first time. She was so tiny and had machines in her and all around her.
She was born at 29wks weighing 2lbs 4oz. she stayed in the NICU at Magee for 67 days. During those 67 days they did an MRI and seen she had massive brain damage from prematurity and lack of oxygen. The doctors came in after reading the results and said she will never be able to walk, talk or be able to do normal things and they weren’t sure what all the damage would be because it was affecting both sides of her brain. They told me I would notice things as she got older and we would just have to wait and see.it didnt matter to me what was going to be in our future. it mattered to me that she made it through! it was love at first sight and nothing will take that away!”
“They then asked me if I was going to put her in a children’s home or if I was taking her home. i said of course, I am taking her home! i couldnt beilve they asked me that question but that is when i knew our lives would be different but i didnt care she is my child.I then started my training with all of her machines that she was sent home with. it was scary and a lot of information to take in, but i learned it and i learned it for her!
She was on oxygen and an apnea monitor for the first year of her life. I noticed she wasn’t rolling or babbling like a normal child, so we started therapy when she was around 6 months old.
When she was 1 and 1/2 we got the diagnosis of Spastic Quadriplegic Cerebral Palsy which is the most sever type of CP because it affects all four limbs. people that often have quad cp are often mentaly handicaped. emily has what is called global developmental delay and that is where her mental age is not with her physical age. emily has a mental capacity of an infant. she is aware of different things and is able to communicate with her family through smiles and babbles.
When she was a little over 2 years old, we got the diagnosis of CVI which is Cortical Vision Impairment, which causes the brain not to send full images, so she is considered legally blind.”
"Emily just turned 3 years old in April, and now gets those therapies at school. She started school this year and is transported in her wheelchair. The teachers are great and they all love her which is a huge plus ;)
She has a gait trainer to help support her so she can take steps, the steps area huge challenge for emily but she is learning and it takes patience and time. she also has a stander which is just something to get her up right and put pressure on her legs. emily loves to be upright! She also has AFO'S which are feet splints, emily likes to point her toes straight out like a ballereina and they keep her from doing that. she also has wrist splints to keep her from clutching her fists all the time. and elbow spints to keep her arms straight instead of to her chest. she hates all of her braces but she has to wear them and they have done wonders for her"
-The Road Ahead:
"Emily cannot roll, sit, walk or talk yet but we are working hard with her so that maybe one day she can. Her leg muscles get super tight so it makes it hard for her to be able to do much, but she sure tries like hell. She can say a few words if asked like “bath” or “Billy” and she understands things like play, eat, outside and a few other simple things. We are getting her to understand a variety of things, but it just takes time and a super amount of patience. emily eats all blended or mashed foods and also has to have thickened drinks. if she does not she will asperate and it is one of the scariest things to see. So that is a little of emilys story she has been through so much in her lil lifetime but she is still going strong!
We just keep moving forward and try to do everything we can to help her along.”
What can you do to help?
Somethings we cannot change, but what we can do, is make a family’s impossible and often inconceivable hardships, a touch more bearable and comfortable for Emily.
Emily’s mother does not work, 100% of her time is dedicated to caring for Emily. Emily’s father does work every day, but makes just enough to get by…I have set up this fundraiser to help give Emily’s family the extra money they need for things like: a van one that fits Emily’s needs as they have a small car, a pak play (floor seating for special needs) thicket (emily has to have all her liquids thickened or she will asperate and it is expensive) or anything else that could possibly make caring for Emily easier or make Emily more comfortable.
Any donation you could make, whether it be a dollar, two dollars, will help facilitate in providing Emily and her family the help they need and will forever need. also if you would want to send emily a gift or even a card with caring words it would mean the world to them! emily's address is P.O. box 92 parker PA 16049
Some would have simply thrown in the towel; it takes a special person to take on all that is required to raise a child with special needs for the duration of their life.
It also takes a special person to help these special people. Be that person; be that human, be selfless, help Emily’s family, make Emily’s Smile just a little bigger.