Courtney Paige Canfield was born September 2, 1998 weighing a healthy 6 lbs, 2 ounces. Courtney started her journey in life as an ill baby. Up until she was about 2 ½ years old she was hospitalized at least once every month of her life. Little did we know that Courtney was born with invisible wings and she would teach a lot of people about unconditional love, faith, hope, the power of prayer and hidden strengths within us all.
Our fight for Courtney’s life started in December of 1999. Courtney, Jennifer (her mother), and I were traveling to Florida for the holidays. I was carrying Courtney through the airport along with my luggage and she fell backwards almost completely falling out of my arms. I managed to catch her by the base of her butt. A few hours later when we arrived in Florida we immediately noticed that she was walking funny; she had a little hop in her step. She complained a few times that her hip and leg was hurting and we were for sure that she had pulled something out of place when she fell. After we returned back to Dallas, several pediatricians and bone specialists’ saw Courtney. Test, after test, after test, was run and the doctors could not find anything abnormal about this child. We even took her to a Chiropractor hoping he could find something out of place. Deep down hoping whatever was wrong with her would be simple and easy to fix. The chiropractor did find a few minor things out of place but nothing major. Courtney went to Children’s for a follow up visit and her pediatrician decided to have the doctors from Scottish Rite visit her on their rounds. Dr. Iannaccone saw the way Courtney was attempting to walk and she immediately admitted her to Scottish Rite. Dr. Iannaccone was very vague about what she thought was wrong with Courtney but she was certain it was not good. We were told they were testing for signs of a degenerative genetic muscle disease called Spinal Muscular Atrophy. After the numerous chest x-rays, extensive amounts of blood work, a very painful EMG and a spinal tap, the diagnosis was confirmed. Courtney was diagnosed with Spinal Muscular Atrophy. There are three types of SMA that affect children. At the time of diagnosis, the doctors were not willing to type her because they wanted to evaluate her progression. We were certain she was a Type III because she was walking and had been walking for quite some time.
Children’s emergency room and Scottish Rite hospital have gotten to know Courtney very well in the short amount of time since her diagnosis. She was hospitalized for about 2 weeks due to chronic sinusitis. She was given IV antibiotics every 4 hours. Courtney slowly started getting picky about what she ate…or so we thought. The doctors made Courtney get rid of her bottle because they felt she was staying full on milk and juices rather than solid food. Taking her off the bottle was not a problem but getting her to eat meals that consisted of solid food was a constant struggle. Courtney would chew food, pack it in her cheeks and eventually swallow it. The doctors concluded that Courtney was losing too much weight and did not want to risk the infections that would set in if she did not have enough nutrition. Courtney was admitted to Children’s hospital for an NG tube to be placed through her nose and into her stomach. Courtney did not mess with the tube and actually gained a few pounds. Within a matter of 5 weeks her tube had come out 4 times. Every time the tube comes out, it must go back in. The very last time the tube was re-inserted I was in the ER with her. I stood outside of the room as the nurses strapped Courtney down with a sheet, very similar to a straight jacket, and shoved the tube down her nose. Every shrill she let out broke my heart into a million pieces. This procedure went on for what seemed like a lifetime. Luckily the nurses got the tube in far enough and did not have to push it any further. Jennifer and I taped the tube in place and Courtney went home.
We knew the NG tube was not going to be permanent and eventually she would have a feeding tube surgically put into her stomach. About a week had passed since the last time the tube had been put in and the doctors wanted to do a swallow test on the muscles in Courtney’s throat to see how strong or weak they were. The swallow test concluded that Courtney has extreme difficulty swallowing. The muscles that she uses to chew are very strong but when she tries to push the food to the back of her throat to swallow, it doesn’t work. On August 21, 2000 Courtney had her feeding tube surgically implanted through her belly. She did great during the surgery but was in extreme pain afterwards. She couldn’t bend over, walking was out of the question and it even hurt her to cry. Her face was extremely swollen from the anesthetic and the morphine was causing her entire body to tremble. Courtney recovered at Scottish Rite and went home 4 days after the surgery. Unfortunately, the feeding tube was nothing but trouble from day 1. Courtney got fed 6 ounces of formula 5 times a day. About 2 of those feedings ended up all over her. She couldn’t seem to hold them down. Shortly after the surgery Jennifer was cleaning the incision and noticed there was something coming out of it. Not only was it coming out, but it was growing! Every time her incision was cleaned Courtney would scream that it hurts. Jennifer took Courtney to the ER at Children’s and they explained the growth to be stomach tissue. Along with stomach tissue coming out, stomach acid was also leaking. When the acid would touch the tissue it would cause extreme pain for Courtney. The doctors gave us ointment and sent us home. About a week ago, the tissue started to grow even more. By this time it’s about the size of a penny. Jennifer had a meeting with Courtney’s doctors and they decided to admit her to Scottish Rite for evaluation. The doctors have been applying Silver Nitrate to the tissue and it has been shrinking. Courtney adapted fairly well to this large tube coming out of her stomach. She understands that it feeds her and she even knows how to work the machine that pumps the formula into her! Courtney is scheduled to get a “G-Button” the end of October, which will take the place of the tube. Courtney has been typed as SMA Type II.
It’s now December 2001 and Courtney has had her button for over a year. Since Courtney has had her G-Button she has gone back and forth from using it every day and night to not using it at all. Dr. I says that if she can keep her weight stable or gain weight for one year without the use of the feeding tube than she will have it removed. Courtney has weighed 24 pounds for a very long time. Since she turned 3 her physical therapy has ceased and her legs continue to weaken. The therapists at Scottish Rite Hospital finally ordered her a wheelchair. The minute she sat in the chair she knew how to operate it; she continues to amaze me. The wheelchair doesn’t go many places with Courtney but when she needs it she has it. The good news is that Courtney has not been in the ER or the hospital in several months and continues to live as a happy child.
We made it into 2002 without a major hospital trip during the holidays! We have come to find out that Courtney has a bladder reflux disorder. The urine backflows from the bladder back into the kidneys. From what I can find out, this is not related to the SMA. She will be on antibiotics for preventative maintenance. The doctors think she will grow out of it eventually. Her February visit to the clinic at Scottish Rite showed that Courtney’s upper torso has weakened over the past few months. She cannot pull herself up from a kneeling position any longer when she falls. And, if she falls to the side while sitting down she needs assistance in getting back up. Dr. I will be running a heart test in the near future. Part of me says that this heart test is normal because it’s a muscle and it’s just time for the test; the other part of me knows that it’s being run due to the atrophy that has occurred in the upper part of her body recently. Whatever the reason for the test I pray that the outcome will be perfect.
February 2002 ~ Courtney enjoys her life and her favorite topic of conversation these days is God. She wants to know about Him and the angels and how you get to heaven. I told her that the angels would hold her hand and lead her to heaven to sit in God’s lap. She is very interested in what she’ll get to do when she is in heaven. As I fought back the tears, I explained to her that she would be able to do things like run, play and even roller skate in heaven. Her response was that she doesn’t know how to roller skate and some one would need to teach her! During our conversations the comment that struck me the most was when she said, “Rhea, will you go to heaven with me when it’s my time.
March 2002 ~ This month definitely had it’s down times. Courtney got dehydrated and spent several days in the hospital. She recovered very well.
April 2002 ~ Courtney had her visit to the Scottish Rite clinic this month. She saw her dietician and Dr. I. She has gained ½ a pound and the dietician seems to be thrilled. Her spine has curved some but does not seem to be of great concern to the doctors at this point. Her blood pressure had to be checked twice while she was there because it was drastically low (80/32). They said this was a classic sign of dehydration and Jennifer will have to monitor everything that goes in and out of Courtney’s body for the next 3 days. Dr. I saw her for about 1 millisecond and said she was doing great. The family is very frustrated with Dr. I. She doesn’t seem to have any concern for Courtney.
May 2002 ~ Courtney is very excited about the SMA conference in June. She will be flying for the second time ever. She was 18 months when she flew for the first time. Her 2-year-old cousin weighs more than she does and her 9-month-old cousin will soon pass her up as well! Dr. I has changed Courtney to a Type III.
June 2002 ~ WOW! Talk about being overwhelmed – the Greatest Conference Ever was just that! I learned a million things that I didn’t know about this thing we call SMA. Courtney met a lot of wonderful kids and made a really good friend with Crystal Allbritton. They had loads of fun playing babies by the swimming pool. We were definitely worn out by the time everything ended but we’re thankful we were able to go and soak up knowledge about what needs to be done to keep her quality of life at the absolute best! Courtney doesn’t use her feeding tube at all anymore so we’re hoping that in July when she sees her doctors at Scottish Rite they will give their blessing to have it removed. Although their blessing is not necessary to have it removed, it’s always nice to know that the “experts” are supporting your decision. Courtney will have new braces made for he ankles; they’re called SMO’s. Her ankles turn in severely when she walks and because they turn in so bad she has no center of gravity and falls a lot. I’m having withdrawals from her. We spent 4 days together and now being away from her is quite an adjustment. We were in the airport traveling home and we were playing with flash cards. The flash cards taught her references of things that go together such as a baseball and a bat. We got to a picture of a carrot and she told me what it was and then there was a picture of a bunny rabbit. I asked her what it was and she said, “A rabbit. Is that little bunny fu fu hopping through the forest?” I laughed all day about that sweet comment. So, we sang little bunny fu fu all day long and I loved every minute of it!!!
August 2002 ~ Courtney is doing very well. Her visit with Dr. I went great. I was there for a few minutes to just hang out and hear what Dr. I had to say. She was thrilled to know that Courtney attended The Greatest Conference Ever. We thought she was going to be fitted for SMO's but Dr. I decided to just have her AFO's cut down some. She is also in the final stage of the Creatine study. This stage will last for 9 months. Of course we do not know if she is being given Creatine or a placebo. Courtney seems to be walking much better now that she is using her braces everyday.
September 2002 ~ These past few months have been wonderful. Courtney is participating in the final stage of the Creatine study that Dr. I is doing. The study will last for 9 months and everyday Courtney is given a dose of either Creatine or a placebo. On September 2nd Courtney celebrated her 4th birthday! She had a wonderful birthday party surrounded by lots of friends and family. Courtney’s main interest right now is Barbie so she had a Barbie birthday cake and got quite a few Barbie’s to play with.
February 2003 ~ The holidays went very well for Courtney and the family. A year ago Courtney was having chronic bladder infections and UTI’s. After many tests were done we found out that Courtney had a condition called VUR. It’s a reflux problem involving her bladder, urethra and left kidney. Sonograms showed that Courtney had 2 urethras coming out of her left kidney when she should of just had one. In some cases, children can grow out of this condition and not have any problems. Dr. Baker put Courtney on preventive antibiotics for one year so she wouldn’t get any UTI’s while we waited to see if she would grow out of the reflux. In November of last year Courtney had a sonogram to look at her kidneys and we saw that her left kidney was twice the size it should be. This concluded to Dr. Baker that she was not growing out of the VUR and would need surgery. Courtney’s surgery was scheduled for mid-December. About 10 days before the surgery Courtney was complaining that her heart was beating really fast and causing her to have chest pains. The anesthesiologist was not comfortable putting Courtney under until she was evaluated by her Cardiologist. Courtney was hooked up to a heart monitor and anytime her heart went on the fritz the palpations would be recorded and sent to the doctor’s office via a telephone modem. The cardiologist concluded that there was nothing of significance wrong with her heart and the surgery could be performed. Courtney’s surgery went off without a hitch on January 31st. The anesthesiologist gave Courtney an epidural so she wouldn’t have to me medicated so much and it worked wonders. She never complained of having any pain. I was sitting in the recovery room with her while we were waiting for her room to be ready and since she could not feel anything below her hips she did not know she had a catheter. At one point her hand touched the top of her thigh and she felt the catheter tube that was taped to her leg. She looked up at me and said, "is that my flu shot?" Apparently she had remembered that a year ago she had a flu shot and she thought she was getting another one while she was in the hospital! I couldn't help but laugh. Her surgery was performed on Thursday and she went home Saturday morning. The incision was made on her pelvic line and is about 5 inches long. The downfall to this surgery is that the doctor had to cut through Courtney’s lower abdominal muscles, muscles that do not grow.
May 2003 ~ Things have been going extremely well with Courtney since her reflux surgery in January. The one thing Courtney brags about these days is that she had her blood drawn and didn't even cry. Trust me, that's a first!!! Courtney is really looking forward to being a flower girl in October. Be sure to look at the pictures of her trying on dresses. Courtney should be getting her power chair soon. She's really struggling with walking. As hard as it is for me to admit, basically she can't walk anymore. She has gone through a growing spurt and gotten quite a bit taller. Her doctors are sure that she has not gotten any weaker, but with her getting longer she has a difficult time controlling her body with her little, weak legs. I struggle with the fact that the simple task of walking for her is nearly impossible. I pray everyday for the COMPLETE RECOVERY of Courtney and all the SMA babies across the world. I like telling stories about Courtney so I'll share the latest one. Courtney came to my house a few weekends ago so we could go shopping for her flower girl dress. Courtney has diamond earrings and was showing them off to Amanda. Well, Amanda has a big, shiny diamond engagement ring so they were comparing. Courtney was telling Amanda that the last time she saw her she was able to walk but now she struggles too much. Then she told Amanda that when she goes to Heaven she will be able to have all the diamonds that she could possibly want! Courtney goes through what I call "phases" about talking about Heaven. About every few months she'll really talk about what will happen and things she wants to do when she gets there. I really feel that Courtney is trying to prepare us little by little for her trip to Heaven. Knowing that she is excited and looking forward to being able to walk, run, roller-skate and everything that comes with being a kid, brings me a little peace.
August 2003 ~ It's only the beginning of August and there's already been some excitement. On the 4th of this month Courtney met with Dr. I which she hasn't seen in a year! While she was at Scottish Rite she also saw the Nutritionist and Occupational Therapist. Good news....Courtney weighs 27 pounds! In the past year she's managed to gain 3 pounds. She's definitely not any thicker so the weight gain must be from her length. Courtney hasn't been walking at all in the last few months. The therapist at the hospital said that she has the ability to walk but since she hasn't been wearing her braces on her feet her legs and ankles have no support for her to walk on. So, Courtney is back in her braces. She also has a new walker. The one she has had in the past went in front of her but this new one goes behind her for support. With her braces supporting her ankles, legs and torso and the walker for her to hold onto she should be in good shape to boogie around as much as her heart desires! When Courtney saw Dr. I she mentioned to her that she wanted her button out. Dr. I said ok and she'd get them in touch with the doctor that put it in. On Tuesday, the 5th, Jennifer called the doctor to set up an appointment for the removal of the button and the doctor said the tube could be taken out at home. Jennifer deflated the balloon and out came the button! Gauze and an ace bandage was wrapped around the hole and now it's healing! Courtney had her button put in 3 years ago this month and has not used it in the past 2 years. It's been more of a struggle for us than a help. Courtney is thrilled to have the button gone. On the 16th of this month we're attending our very first SMA fundraiser. It's called "Odds On A Cure" and will be held in Ft. Worth. Courtney is very excited to meet Savanna Rush and her parents who are putting the fundraiser together. Her power wheelchair should be delivered around the 17th of the month. Courtney also starts pre-kindergarten at the end of the month. I don't know who's going to need the prayers for patience, Courtney or her teacher!
November 2003 ~ The previous 2 months have been a little bit of a roller coaster. First of all, Courtney loves school. She loves her teachers and all of her friends. I'm not sure how many boyfriends she has this month but I'm sure it's plenty! Courtney got her power chair back in August and it has been a true lifesaver. My favorite thing to hear her say is "Here, follow me!" I haven't heard those words in years! Unfortunately, the walls in the house are not too pleased with the power chair, but those things can be fixed. And she's had to learn to watch out for the 4 legged figures down below. The "Odds On A Cure" Fundraiser was fantastic. I'm sure there was a huge impact on the community of people that attended that night. Now, about the wedding! Courtney, her mom and dad and mimi dropped Thomas off at school Friday the 25th and headed out for Fredericksburg. The rehearsal began around 4:30 and Courtney was extremely shy for about, hmmmmmmm, 5 seconds and then the charm came out! She loved her wagon and she loved Eric, the ring bearer who pulled her in the wagon. That night we all headed out to the Tin Star for dinner and fun. Everyone commented on Courtney's chair and how much she could do with it. Of course she had to show everyone that it goes really fast! Dinner was great. We watched a wonderful slide show honoring Amanda and Parrish as kids, teenagers and into their dating years with each other. After the slide show the toasts began. First, Mr. Pettey gave a wonderful toast. He is so excited to have Amanda in their family. Then, Reagan Pettey spoke about his memories of his brother and how much he loved Amanda the first time Parrish brought her home to meet the family. Amanda and Parrish bought Courtney her shoes for the wedding and gave them to her at the rehearsal. They were white with loads of sparkles all over them. I found out the next day that she wanted to sleep with them on! Since she couldn't do that the compromise was for them to be on the nightstand right next to her! She cracks me up. Her hair was sponge rolled and turned out absolutely beautiful. She loved her ring of fresh roses that she wore. The minute Eric came around the corner with her the entire crowd just awed. Eric and Courtney were absolutely breathtaking. Eric was just a prince in taking care of her all afternoon. I'm sure their cheeks hurt from smiling so much. Courtney threw rose petals from the wagon. She was great during the ceremony. At one point the brides veil flew up and Courtney reached in the air, grabbed a hold of it and held it so it wouldn't blow away again. At the end of the ceremony as Eric was taking her back down the walkway she threw more rose petals. The crowd just laughed! So many times during the night I was told how beautiful the bride and her bridesmaids were but "Courtney stole the show!" I don't know who was glowing more, the bride and groom or Courtney. This wedding will be something she and everyone there will remember for the rest of their life. I'm so thrilled she was such a special part of Amanda and Parrish's day. After returning home from the wedding Courtney got really sick. She had a high fever and was vomiting. Within 3 days she was in the ER 3 times. She got the flu. After a big shot of Rocephin she started to get better. Times like that are always scary. This time of year is really frightening for SMA babies because they tend to have more respiratory problems than most. Luckily for Courtney, she's been able to skate by the respiratory issues. The weekend before the wedding Courtney participated in a rodeo for the disabled in Sherman, Texas. She won 3 prizes and will compete for Queen next year. As far as she's concerned she's already the Queen!
February 2004 ~ Courtney is growing up so fast! The holidays were great. Courtney and her brother were spoiled with gifts. At the end of the year before the holidays Courtney was attending Pre-K for half days. Since school has begun this year she is finally attending all day! She loves it - she is even ok with nap time. Courtney is the only physically disabled child in this particular school district. The kids just love her and so do the administrators. Sometime in January Courtney was playing at the neighbors house and eating a corny dog for lunch. The chair she was sitting in fell backwards and so did Courtney and the corny dog stick. The stick ended up cutting her upper gum (underneath her top lip) above her top row of teeth, wide open. I happened to be in the area so me, Courtney, her mom and mimi all headed to the hospital. The doctors there wouldn't touch her. They wanted a cosmetic surgeon at Children's to stitch her up. Once she got to Children's the doctors decided to let nature work it's miracles; and it has. Her gum has healed quite nicely. This month has been rather rough. Courtney has had an upper respiratory infection that will not go away. Her meds have been changed twice by her pulmonologist. The one thing that has worked well is the cough vest that was ordered by the pulmologist, Dr. Shokat. She loves to play "I Spy" when she has the vest on. She's been out of school for two weeks already and she hopes to be well enough to attend her Valentines Day party. A couple of funny stories - Courtney was helping her Mimi cook dinner and she informed her mimi that "The world wouldn't be the same without her in it!" If she only knew! I called Courtney the other night and she told me that her daddy was taking care of her while her mom went somewhere. Her daddy fell asleep and she wanted her fingernails and toenails painted. This is what she told me, " I was hollering, daddy, daddy, wake up and paint my nails...and he wouldn't wake up and I thought if he doesn't wake up soon I'm going to have to call Rescue 911, but finally he woke up!" I asked her if he painted her nails. Her response, "uh-huh, the pink color with the glitter!"
January 2005 ~ I can't believe it's been almost one year since I've updated Courtney's story. Courtney is in Kindergarten this year and loves her teacher. She has a lot of 'best friends' such as Nellie, Tatum and Whitney. She also has two good friends that live in the neighborhood named Ashley and Crystal. Courtney had a wonderful summer playing outside and going to the lake to swim quite a bit. Her birthday was good. She had a "Princess Party" and all of the girls dresses as beautiful princesses. All of her cousins and friends were able to celebrate with her. I have a funny story that I must share with everyone. Courtney attended my graduation from UNT on December 18th and all of my family came into town and my best friend, Amanda and her husband Parrish attended as well. After graduation we all went to dinner. Amanda was sitting with Courtney at the table and noticed that Courtney had lost her very first tooth. Amanda asked Courtney how much the tooth fairy gave her and Courtney replied with "$7 dollars, but that's only for the first tooth; other teeth I will only get a quarter." Then Courtney told Amanda that she didn't understand how her tooth ended up in her baby book if the tooth fairy took it. This is how Courtney explained what happened to her tooth: "My mom told me that the tooth fairy took my tooth and flew back to fairy land to show all the other tooth fairies and then came back with the money and the tooth so mom could keep it." Wow! What a story!!! Christmas came and went. Her and her brother must have been really good this year because Santa brought them a lot of goodies. I spent the night at Courtney's house on Christmas eve. I slept in her bed and she had a pallet right next to me. On Christmas morning she woke up and said, "Rhea, I heard Santa land on the roof last night!" I said, "How do you know you heard Santa?" She said, "Well, I heard the reindeer hit first because I heard their hoofs hit and then I heard a really loud bang and I knew it was his sleigh!" We all had a great holiday season and I'm very thankful that we made it through without any illness amongst us. Courtney is doing fantastic in school. She is one of a handful of kindergartners that are reading. She absolutely loves reading. She got sick about 3 weeks ago running a high fever and throwing up. After a few hours at the ER and a big shot of antibiotics she was doing much better. We're very blessed that Courtney has not been ill in quite some time. Her body is getting noticeably weaker but I guess that is to be expected. Her neck control is the one thing that I see to be slowly progressing. When she is not in her chair she is still able to scoot across the floor on her butt using her arms and legs for stability. I think her most favorite part of her day is bedtime. Every night Courtney and her Mimi lay in bed and Mimi lightly massages her and tickles her back. While this happens they meditate together and tell dreamy stories to each other. Courtney's main topic these days is Heaven. She is really interested in Heaven again and what it will be like when she goes. She told her Mimi that she knows that when it's her time to go to Heaven that people will be sad but she doesn't mean for them to be. She also wanted to make sure that when she goes that we would still know she's around even though she's in Heaven. Mimi assured her that we would always know she's with us. She says she's ready to go to Heaven but doesn't know when that day will be.
August 2005 - Courtney is getting ready to start the 1st grade and turns 7 in less than one month! It feels like yesterday that she was in Pre-K. Courtney really loves school and is anxiously waiting to go back. Courtney went to MDA camp this year for her very first time. She made many friends who continue to call her daily. Most of the family went to see her board the bus and leave for the week and I think I cried the most. I was so happy for her. Camp is wonderful and I knew she would make life-long friends who are just like her. Courtney is the only handicapped child in the school and she struggled a little this past school year with the difference between her and her classmates. Her school atmosphere constantly reminds her of her differences and while she was at MDA camp she didn't have to be concerned with the differences. I wish MDA camp was everyday!!! She has been very healthy this year and we are so blessed for that. Towards the end of the school year Courtney started to lose control of her urge to pee. We were a little concerned that her kidney reflux had come back so Dr. Baker, her urologist, ran some tests on July 22nd and everything came back fairly normal. The reflux is not back, however Courtney's bladder does not hold as much urine as other children her age and she is showing distinct signs of weakness when it comes to tightening her muscles when she feels the urge to pee. We knew her muscles would get weaker and can deal with that issue; we are just relieved to know that her kidney reflux has not come back.
December 2005 - I cannot believe it's almost 2006! Courtney is
doing absolutely wonderful in the 1st grade. Mrs. Martinez is still her
aide and that's a good thing. If it wasn't for Mrs. Martinez I don't
know that Courtney would make it through the day. Courtney's best friend
these days is Whitney. They are like sisters and do everything together.
When Courtney was a MDA camp this summer a local news reporter, Mike
Snyder, spent the day with her. They filmed her doing arts and crafts,
dancing with her chair, climbing a wall and riding the zip line back
down from the climb. This footage was then aired on Channel 5 during the
MDA Telethon. There were several SMA children featured that day. She was
also interviewed by Mike Snyder to talk about MDA camp. She said that
she wished she could go back to camp that day! In October I found out
about a movie that was going to air in Dallas in December. The movie is
39 Pounds of Love. I e-mailed the director and found out that there was
special screening just 2 day away. They invited Courtney to attend. She
had so much fun. The movie is about a 38 year old man named Ami who has
Type 2. Much to our surprise, Ami was there at the end of the movie. We
met Ami, the producers and directors of the movie, Ami's mother, Helena
and Ami's brother, Oscar. It was so special for us because Ami lives in
Israel and didn't attend many of the screenings. Besides Ami, Courtney
was the only SMA person there. About a month later, Kim Fishman the
Associate Producer of the movie contacted me about another screening
that would be done prior to the preview in December. Harley Davidson is
a big supporter of MDA and they are also a big supporter of the movie.
Kim arranged for a Love Ride to be held right before the movie. Courtney
and Darrell Allen Jr. were the stars of the night. There were about 15
or so Harley Davidson's that showed up for the ride. The kids were put
in the back seat of a convertible Mercedes and the motorcycles
surrounded the car as they drove around Uptown in Dallas.
They ended at the Magnolia Theater for the movie. That night was awesome
and I know Courtney will never forget it. About a week ago Courtney came
down with an upper respiratory infection and bronchitis. Luckily, it was
caught early enough that antibiotics were not needed and she is doing
much better. Be sure to check the photos for the pictures of
the Harley Love Ride.
Courtney is the light of my life; she is my world. The news of her having SMA was devastating. Courtney has touched the hearts of everyone that has come to know her. I do not know how long I will be blessed with Courtney’s love in my life but I do know that she is a very happy baby. Courtney is full of love and laughter, blows kisses to anyone that will catch them, gives free hugs and loves like an angel.
As you have read, SMA is a very traumatic disease. It takes a toll on everybody’s heart that is involved. Without the love and support of others, SMA babies would not survive half as long as they do. This is not the life I would of chosen for Courtney to live but it is a life worth fighting for. Please join my family and I in our fight to save our daughter, niece and granddaughter. The researchers and doctors that live their life to treat and find a cure for this disease are my hero’s. A lot of families are not as blessed to have their loved one in their life as long as I have had Courtney. Babies that have passed are referred to as “earning their wings”; they are angels.
Courtney is my earth