Friday, July 31, 2015

BE THE AWARENESS- a rare series. Paisley's story- Alagille syndrome

"Paisley is in the biggest fight of her life.  She truly shines with her own light.  Just as in Matthew 21:22 says "And all things you ask in prayer, believing, you will receive".  We continue to do just that, believing in prayer, asking God for a miracle, for him to wrap Paisley in his arms and carry her through this blessing with complete healing and restoration"  --Courtney Walter, Paisley's mommy

Meet Paisley, our first story in our rare series!  Paisley has Alagille syndrome.  Alagille syndrome is a very rare syndrome, affecting 1/70,000 newborns.  The syndrome can affect many body parts including the liver, heart and lungs.  Paisley was born in September of 2014, and had her first open heart surgery at 5 weeks old.  Paisley is a beautiful happy little baby and I very much enjoyed getting to spend this time with her!!

Alagille syndrome:
-affects liver, heart, lungs and other parts of the body
-1/70,000 newborns
-50-70% of cases are new genetic mutations, 30-50% of cases inherit a gene from one parent
-often diagnosed on liver function, or a heart defect like tetralogy of Fallot
-symptoms have a wide range, from mild to severe
-distinctive facial features
-may effect growth

Here are a few links for more information on Alagille syndrome:

Alagille syndrome

Alagille syndrome - CHOP

Other links:

Global genes org

National organization for rare disease

Here is Paisley's story, told by her mom Courtney:

In May 2014 we found out we were pregnant.  At 20 weeks after a sonogram we found out we were having a girl, but with that we were also told they found cysts on her kidneys. I was extremely nervous and scared because at that point we didnt fully know the extent of her problems.  A week later I was sent for a second opinion in York where they also confirmed the cysts on her kidneys but they also noticed abnormalities with her heart, being also being small in size for gestational age.  It was confirmed she had what is called Tetrology of Fallot.  Genetic testing was suggested for both she and I, although she could not be tested till she was born.  Testing revealed I had a rare genetic disorder called Alagille syndrome.  We were then transferred to University of Maryland for the rest of my pregnancy care.  on Sept. 29, 2014 I was admitted to University of Maryland Hospital due to pre-eclampsia.  On Sept. 30, 2014 via c-section at 10:11am my 4 lb 3 oz, 17 in. long beautiful baby girl Paisley Mae Topper was born.  She was taken immediately to the NICU.  TOF babies are also known as blue babies due to the tint or blue complexion of their skin from the lack of oxygen in the blood.  At this point Paisley's Oxygen sats were running in the 70 percents.  She was too small for any surgical intervention.  Genetic testing on Paisley revealed she too had Alagille syndrome which many doctors are unfamiliar with due to it's rarity of 1 in 70,000 occurrences.  At 3.5 weeks old Paisley was transferred to Penn State Hershey's Children's Hospital to be closer to family.  On November 5, 2014 2 weeks after arriving at Hershey, Paisley had her first open heart surgery at 5 lbs and 5 weeks old.  They placed a patch on her pulmonary artery in hopes that it would grow and further down the road a full repair of her heart could be done.  She remained in the hospital for another 2 1/2 weeks, 5 days before she would turn 2 months old.  She would continue to be followed by Hershey's team of doctors and later would be seen and followed by Childrens Hospital of Philadelphia, or CHOP.  CHOP is one of the best in the world in knowledge and specializing in Alagille syndrome.  Paisley was set up at 7 mo. old for a feeding tube to be placed to assist her in gaining weight and growing.  Prior to that she would need to be cleared for surgery by her cardiologist.  During her Cardiologist appointment Paisley's Oxygen saturation's dropped down in the 80 percents.  They performed an echocardiogram where they found a blockage within the pulmonary artery of the heart.  Paisley's feeding tube surgery was placed on hold and a heart catheterization was scheduled for July 16, 2015 to see what they could do.  During the heart catheterization Paisley was noted to have an extremely small pulmonary artery along with all the major blood vessels and arteries throughout her heart and lungs.  The doctor came out of her heart cath to inform us of the findings while Paisley was in recovery and told us they could not do anything more for her and that her only hope was a heart and lung transplant but due to her Alagille's diagnosis she may not qualify to be put on the transplant list.  As soon as the doctor told me the news I started crying and was so devistated to the point I could not speak.  We are now waiting to hear what our next step will be.  Paisley may be small for her age, but she is just like any other 10 month old, ornery as ever.  She's such a happy baby.  She loves mini mouse club house and loves to eat, she wants what everyone else has and isn't afraid to make it known.  Paisley is in the biggest fight of her life.  She truly shines with her own light.  Just as in Matthew 21:22 says "And all things you ask in prayer, believing, you will receive".  We continue to do just that believing in prayer asking God for a miracle, for him to wrap Paisley in his arms and carry her through this, blessing her with complete healing and restoration.  

--Courtney Walter, Paisley's mommy
click here to go to Paisley's GO FUND ME page

Thursday, July 30, 2015

My mom is finishing her Breast Cancer treatment! Early detection saves lives!!

Last November my mother was diagnosed with bilateral stage 2 cancer and had a double lumpectomy.  Her Chemo started shortly after that (the day before Christmas eve) and then was followed up with radiation therapy 5 days a week!  She will have many follow up appointments, and she will never be free from worry, but her treatment is over and she is onto the next stage of life!  Please share her message with your loved ones "GET YOUR MAMMOGRAMS!!!".  Her routine mammogram found cancer in one side, followed by an MRI that found it in the opposite breast!  NO LUMPS!  Her mammogram saved her!

CONGRATS momma!  Love you!

Monday, July 27, 2015


I have been MIA from the photography scene, for the most part, aside from a few photo sessions here and there.  Why??  Because of this beautiful baby below... 

Sophia has changed my priorities and shown me a world I may have never known.  Sophia was born with a very rare syndrome.  It has been a journey!

In honer of Sophia, and the "awakening" she has caused in me, I am doing a series titled "BE THE AWARNESS- a rare series".  This series will showcase babies and children with rare disorders, that have a journey to share and awareness to spread.

Do you know someone with a rare journey to share??  Please have them contact me!  If they are chosen to be a part of this series they will get free images from Carrie Wren Photography and awareness for their cause!!

Sophia's journey and rare syndrome will be shared in this series also, but first, we will start with this little beauty (below) and her story.... coming soon!