Alstrom Syndrome Charitable Fundraiser

A note from Cayla Atwell…

Dear Friend,
Please allow me to take your time to tell you a story of my amazing daughter, Brooklyn who is only 4 years old.  Whether you believe in God or not, He truly has proven He is capable of still doing miracles today.  This is Brooklyn ‘s story.

When Brooklyn was only 7 weeks old, she quit breathing one Sunday in church.  We rushed her to the hospital and was told she may have had an allergic reaction to perfume.  Even though they couldn’t get her blood pressure or oxygen stats, they sent us home to follow up with her Pediatrician the next day.  When we arrived at her Pediatricians office, she was breathing so hard that when they put her on the scales to weigh her, the scales were hitting the wall.  This alarmed our Pediatrician and he immediatly called for the ambulance to come transfer her to Huntsville Womans & Children Hospital .  When we arrived at HH, she went into shock and was put on life support and was not expected to make it through the next few hours.  After extensive testing, it was concluded her heart was enlarged, and her kidneys and liver were both enlarged and dropped, which meant her body was shutting down. 

After a week at HH with no improvements, she was then transfered to Vanderbilt Children’s Hospital in Nashville to have a biopsy done on her heart muscle and MORE extensive testing.  At Vanderbilt, we found out she had Dilated Cardiomyopathy secondary to Congestive Heart Failure, and also Nystagmus (shaky eyes).  She was at Vanderbilt for a month and then sent home on 5 medicines two times a day, and was also placed on the heart transplant list because of it’s damaged condition.. 

At this point, it was just a miracle she was even alive!  A year passed and despite what the doctors told us, she came off of the heart transplant list and off of all her medicines except for one.  The doctors told us this was unexplainable and very unexpected…a true MIRACLE!  I said with all of my might that it was GOD and He simply answered our prayers…HE HEALED HER!!!!  We gave Him all of the praise and glory that He so richly deserved.

By the age of 2, we noticed her sight was progressively getting alot worse and also that she was extremely light sensitive.  We eventually found out she was very near and far sighted.  She was diagnosed with Photodysphoria (extreme light sensitivity), Nystagmus, Cone Rod Dystrophy, hearing loss in both ears, a kidney reflux called Vesicoureteral Reflux, and considerably overweight for her age according to her Pediatrician. 

Being a very concerned and investigative Mother, I was concerned Brooklyn wasn’t recieving the correct diagnosis.  As Brooklyn started developing all of the above symptoms, I just had a ‘gut’ feeling that they all had to be related some way.  So, I started researching online and found a rare genetic disorder called Alstrom Syndrome.  I thought there was no way MY daughter could have this monster of a syndrome that held a life expectancy of only 40 years.  Alstrom Syndrome leads to blindness, heart, kidney, and liver failure, deafness, obesity, diabetes, and she would be unable to have children.  And to top it all, there are only 600 diagnosed cases of Alstrom Syndrome in the WORLD!!!  I was in major denial…

I put all of this information away for a year.  Then one day, I felt like God told me to keep researching Alstrom Syndrome.  So, I prayed for God’s hand of peace, patience, and most of all an understanding as to what the out come would be.  With God’s mighty strength, I took all of my findings to her Pediatrician.  He found all of the information very interesting, and then referred us to a Geneticist in Birmingham .  During my online research, I found that the only place that tested for Alstrom in the world was Maine , Germany , and Portugal .  I ran this information by our Geneticist and we decided then to send her blood work to Maine for testing…  We were told it could take YEARS to find the Alstrom gene because of such a broad area that it is located in.  We all decided no news was good news, right?  Well, 6 months later, the Lab calls and tells us they found TWO mutations of the Alstrom gene, which is not common at all.  You have to have two Alstrom gene mutations to have it because it is a recessive disorder, but they usually never find two mutations because of the area it is in.  This was, of course, devestating news for us to hear but at least we finally knew what was wrong with Brooklyn . 

So, now here we are about 9 months from the diagnosis of Alstrom Syndrome just living day by day, trying to get Brooklyn the best help we possibly can.  We see about 20 different doctors and are working closely with the school system here in Oneonta to get her ready for learning Braille next year.

Brooklyn is such a blessing to everyone she meets.  At such a young age, she already has a HUGE testimony to tell when she gets older. 

In 2010, the Alstrom Syndrome World Conference will be held in Helen , GA.  We are currently working on a fundraiser to raise awarness of Alstrom and also to support our family as well as other Alstrom families around the world who cannot afford to attend the Conference.  At the conference, we will be able to meet doctors from all over the world who specialize in Alstrom. 

After thinking of ways to raise money, God led me to Boogie Bottoms Family Entertainment Park & Drive-In Movie.  The Branham and Boatright family were so generous as to allow us to have our ‘Family Fun Day’ Event there free of charge.  On August 29th, 2009 from 11-6 PM, we will have a HUGE Alstrom Syndrome Charity Fundraiser.  All gate proceeds will go to benefit Alstrom Syndrome International which is a 501 (c) (3) registered charity and our family as well as any other Alstrom families who need assistance to attend the conference.  With the help of Boogie Bottoms Family Entertainment Park , the event will have the following:

Chrisitan Drama Teams                                 Carnival Games

Christian Bands                                         Horseshoes (Tournaments)

Country and Western Bands                             Incredible Food and Concessions

Moon Walks by Charlie the Snow Cone

I am writing to ask you for an interview on your show to help us raise awareness of Alstrom Syndrome and to get the word out about our Charitable Fundraiser.  Please consider helping us and most importantly helping Brooklyn !!!  Thank you so much for taking time out of your day to read this email.

God Bless,

Cayla Atwell

256-628-0987