Alessandra’s Site
Welcome!
Alessandra has a very rare disease called McCune-Albright Syndrome or 'MAS'. It is so rare that most doctors have never heard of it unless they are involved in a medical study on it. We apologize for not keeping our loved ones updated regularly but are very busy juggling day to day activities and medical on top of it.
We desire to keep you informed and hope that this site will help with that.
Check back often for updates.
My Story
When she was 10 months old we discovered that she was having vaginal bleeding during a diaper change. We took her to the ER where we were told that the bleeding was very light. She wasn't hemorrhaging or in danger of losing too much blood.....so they sent her home with orders to make an appointment with her pediatrician. We were referred to a pediatric endocrinologist who started off by doing a blood test to determine if she had precocious puberty (which is treatable with a once a month pill until old enough for puberty) The test results came back negative. So through the next year we dealt with an extremely hormonal toddler who grew from wearing 6 months size clothes on her first birthday to wearing size 3-4 by her 2nd. We were constantly on the phone with or back and forth from the doctor for breast enlargement, vaginal bleeding lasting 5-7 days, acne, bone discomfort, etc. We had a toddler who seemed to be in full blown puberty! YIKES! After several tests that all came out negative, I prayed and asked God to lead me in the right direction. I then spent a couple of nights doing my own research on the internet. I looked up her symptoms and then started 'X-ing' out the disorders that didn't seem to match completely what we were dealing with in her. I stumbled on the Magic Foundation web site which had a very basic description of McCune-Albright Syndrome and I knew that was it. Upon further research...I found that one of the first signs, in most cases is vaginal bleeding before the age of one or two. After a slew of extensive tests...MRI, CAT scan, extensive blood work, etc, ruling out all other possibilities....her results were sent to the study doctor for MAS at NIH (National Institutes of Health) who confirmed that she did have MAS. We were invited to join a medical treatment study there, but upon further research and lots of prayer were uncomfortable with the treatment. So we waited. Within 6 months we got a call from her doctor saying that a doctor at Doernbecher (OHSU) was starting a study for MAS. We met with Dr. Daniel Marks and felt that this was what we needed to do. It was the best option for her and it was only 10 minutes from home! (We moved to Oregon for my husbands work when she had just turned one, not knowing that any of this would come about. God put us right where the study that would be best for her would be....or vise versa.) They found that she has the hormone disorder which triggers excessive growth hormone release, Fibrous Dysplasia the bone disorder (Bummer!) and a very small Cafe-Au-Lait spot on her leg. The treatment seemed to help. It didn't stop the symptoms all together...but it seemed to slow them down. We did notice an extreme difference when a dose was missed. We have tried to make this experience the best possible for Alessandra. When she has to have tests done, we make a day of it by visiting all of her favorite places in the hospital and visiting all of her 'friends' that she and her siblings have made from the people who work there. The employees are wonderful there! Always showering her with attention and treats whenever possible.
Every day with this disorder is a learning experience! As soon as we think we have it figured out and things are going smoothly...something else develops or advances. But our daughter is beautiful, happy and as far as general health goes...she is very strong and healthy!
We do know that God IS in control and that He has a plan through this. If He chooses not to 'zap' it away...then He has something bigger and better in store for us through it.
Jeremiah 29:11 states:
For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.
2 Corinthians 12:9
But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me
Isaiah 40:29
He gives strength to the weary and increases the power of the weak.
(NIV)
Informative Sites
These sites will help to inform you more fully on what we are dealing with in Alessandra. We will add more as we go along.
http://www.magicfoundation.org/www/docs/109/mccune_albright_syndrome.html
http://www.healthsystem.virginia.edu/UVAHealth/adult_bone/fibrdys.cfm
http://en.wikipedia.org/wiki/Bone_maturation
http://www.caninesforkids.org/
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