To Help the Avery's read HOW TO DONATE at the bottom of "About Tyler".
MY STORY : My name is Tyler and I am twelve years old. I have two brothers and one sister. I love to be outside and when I am feeling good I am involved in lots of fun things like co-op, baseball, church and Boy Scouts.
I started having trouble when I was about six. My legs would hurt alot, I would get weak and sick alot too. Many doctors told me it was just growing pains. For years I was misdiagnosed. My parents kept insisting there was something very wrong and at their urging the doctors ran test after test. I started to have more and more episodes of illness.
When I get sick many times I end up in the hospital with extreme pain that even narcotics cannot help with. I often pass out and stop breathing for short periods of time. Sometimes I have hemiplegic migraines and temporary paralysis. A hemiplegic migraine is like having an icecream headache for days and days. I do not get any relief until the I.V. fluids kick in and help my cells to start working correctly again. It can take 36 to 48 hours or more before I can even lift my head. Doctors have tried many things but so far not much has helped the pain. I take 25 vitamin supplements and medicines a day. Sometimes when I am just weak and not in too much pain I get I.V. fluids at home. I have been in the hospital over 100 days in the last few years. I often become extremely ill very quickly and with little warning. I have had to be transported by ambulance many times and once I had to be care flighted to The Mayo Clinic. I try to be very brave but I know it really scares my Mom and Dad.
Finally in November 2007 I was partially diagnosed through a muscle biopsy. I have several rare genetic illnesses that they were able to diagnose. I have Mitochondrial disease Complex I and IV, and I am a carrier for CPT. In addition to that I also have a point mutation in my D.N.A. that causes Hemiplegic Migraines and Ataxia. I often have severe Dysautonomia which causes me to have alot of blood pressure issues. With all my now extensive evaluations my doctors feel there are still some pieces missing but they are working hard to put things together.
Since I am allergic to Nsaids and Narcotics do not work well with my Mitochondrial deficiency I often have little to no relief from pain when I am ill. I suffer daily with some degree of pain and weakness but I am very very thankful for everything I am able to do on the days I feel good. Many other kids with Mito are not as fortunate. I would like for people to understand that kids with Mito often look good on the outside what you cannot see is how very sick we are on the inside.
I think many children like me are either misdiagnosed or ignored if they are able to do many things physically and mentally when they are not sick but often suffer pain and weakness daily and episodically.
Mitochondrial disease has no proven treatment and no cure. It affects each person differently and is often progressive. Some people live long lives with this illness; for others it can become fatal with little warning. When I grow up I hope to become a geneticist and help to find a cure for all of us.
Most of all I would like to say I could not get through any of this without God's help. I am so thankful he made me and he loves me. He gives me the strength to get up even when I do not feel like it.
I really really like to read my carepage messages. When I am sick my mom reads them to me, so if you get a chance leave me a message and please keep me in your prayers. Thanks.
The Songs in Video: 'Praise you in the Storm' by Casting Crowns 'Bring the Rain' by MercyMe
If you would like to help me with my medical expenses here is how to help.
Thank you!
1) Make checks payable to Helping Hands Ministries, Inc.
2) In the memo line, please specify #51720. This number will reference the Tyler Avery Fund (IN KEEPING WITH A TAX DEDUCTABLE CONTRIBUTION PLEASE DO NOT WRITE TYLER AVERY IN THE MEMO OR ANYWHERE ON THE CHECK).
3) On a separate sheet of paper please write the recommended medical fund you would like to donate to (THE TYLER AVERY FUND #51720).
4) Mail checks to:
Helping Hands Ministries, Inc.
PO Box 337
135 Main Street
Tallulah Falls, GA 30573
To Donate By Credit Card:
1) Please fill out the credit card form (we accept MasterCard, Visa, or Discover)
2) Mail to above address or fax to (706)754-9247 or email to michelle@hhmin.org
3) Please print name and address clearly and do not forget to sign form.
ALL CONTRIBUTIONS ARE TAX DEDUCTABLE
Please contact us if you have any questions (706)754-6884 Helping Hands Ministries.
