Thursday, March 29, 2012

Saying Goodbye to Emma

Photo captured from Emma's mom's blog was taken during the Make A Wish Trip.
Emma, the sweet girl in the pink, is now at peace. Her battle with PKAN is over. In a happier time, I was blessed to capture a moment in her life, when Emma and Alex were given the gift of a trip to Disney & Florida by the Make A Wish foundation.

Their story, which originally appeared in the January 27, 2010 issue of the Siloam Sprigns Herald Leader, is reprinted below. 

Emma, I hope heaven is full of pink shiny things and that Mr. Bill (a mutual friend who passed away a time ago) was there to meet you with lots of balloon animals and hugs.

May God give those of us left behind peace to continue on our own journey.

And may God give extra grace and mercy to your parents and to Alex. 

Until we meet again.

On a side note: Drew and Mandy have established "Happy Like This" a non-profit foundation to help others - and to share well, happies.You can find out more about it here: http://happylikethis.com/

Florida bound
Make-A-Wish helps dreams come true for 2 local girls
By Kaylea Hutson Special to the Herald-Leader
Wednesday, January 27, 2010

SILOAM SPRINGS — Two Siloam Springs girls are learning this week that sometimes, wishes really do come true.

Alex and Emma Harris, along with their parents, Drew and Mandy, left Sunday for a 12-day trip to Florida, thanks to the Make-AWish Foundation of the Mid South.

The girls are receiving two separate, but complimentary wishes, through the foundation. Emma wished to meet Mickey Mouse, while Alex asked to swim with dolphins.

For Emma’s trip, the family will stay at “Give Kids the World Village,” and receive passes to the Magic Kingdom, Epcot, MGM Studios, Universal Studios, Animal Kingdom and SeaWorld.

During Alex’s wish, the family will stay at the Renaissance Resort. Alex will get to swim with dolphins at Discovery Cove and receive a VIP tour of SeaWorld, as well as spend more time at the Disney parks.

Drew, a staff sergeant in the U.S. Army, currently deployed stateside at Ft. Sill, Okla., was given leave by the military for the trip.

It was Drew, who first contacted Make-A-Wish, after his girls were diagnosed last year with Pantothenate Kinase-Associated Neurodegeneration or PKAN, a rare genetic disorder that allows for the accumulation of iron in a person’s brain.

PKAN causes the girls to exhibit many of the symptoms similar to Parkinson’s disease, including a rigidity of muscles, tremors and a lack of coordination. It also affects a person’s cognitive and developmental abilities.

One to three individuals for every one million births are diagnosed with PKAN. Alex and Emma are the first diagnosed cases of the disease at Children’s Mercy in Kansas City.

Most people with PKAN only live into their 20s or 30s. Individuals, like Alex, who present symptoms early in life, often progress with the disease at a faster rate.

“We wanted to do all we could while we were able, and they could enjoy it,” Mandy Harris said.

When volunteer “wish granters” from Make a Wish came to discuss possible wishes with the girls, Harris said she initially thought it would be one wish, for both girls.

“They made it clear that each got their own wish, and they didn’t have to share it and they didn’t have to agree on a wish,” Harris said. “We didn’t have to try to figure out how to make the wishes work together.”

Initially, Harris joked, 4-year-old Emma wanted to “go shopping.” Later, she said she wanted to “see Mickey Mouse” and be a princess.

Harris thought Alex would want to meet Hannah Montana, but the 7-year-old asked to “go swimming with dolphins,” because she wants to give a dolphin a kiss. Alex also wants to see Cinderella and give Goofy a hug.

Because crowds sometimes overwhelm Alex, who now spends most of her time away from home in a wheelchair, Harris said the Make-A-Wish volunteers planned the trip for January - a slow season in Orlando.

The Harris’ hopes the trip will allow their daughters to feel “special” for a good reason and take a break from the worries of therapy, medical treatment, daddy being in the Army and life in general.

“They will get to do fun things just because they are Alex and Emma,” Harris said.

Finding a diagnosis
Harris said they knew that something was different about Alex, from the moment of her birth.

Initially, doctors at Arkansas Children’s Hospital suspected Alex was not hitting normal childhood milestones because she was born with clubbed feet and hip dysplasia. Doctors believed she would begin to develop normally once corrective surgery was completed.

The possible diagnosis of an unknown, but genetic disease came when Alex was 24 months old. At that time, Mandy was 6-months pregnant with Emma.

Initially, doctors thought Emma was disease free, but after a year, she began to develop symptoms similar to her sister.

When Alex was 4-1/2, the Harris’ decided it was time for a medical “fresh start” and made an appointment for Alex with doctors at Children’s Mercy in Kansas City.

For two years, doctors continued testing Alex, trying to determine what disease caused her symptoms.

In February 2009, Alex’s case was referred to Dr. Jean-Baptiste Le Pichon, a child neurology specialist at Children’s Mercy.

After extensive testing, which again, ruled out all basic genetic diseases, a new MRI revealed an accumulation of iron in Alex’s brain. Those tests were sent for further examination, which led to the diagnosis of PKAN.

Emma, although her symptoms are not as severe as Alex, exhibits the same iron patterns in her brain and has been diagnosed with PKAN as well.

Life with PKAN
A self-defined “information junkie,” Harris limits what she reads online about PKAN, for her own mental well-being.

Instead of looking ahead at the possible life expectancy of her children, Harris relies on her faith, living in the present “one moment at a time.”

“My children are not defined by this, they are Alex and Emma,” Harris said. “They just happen to have this disease.”

The Harris’ are striving to raise Alex and Emma like two, regular little girls, who like pizza, the colors pink (Emma) and purple (Alex) and ask to eat at Chili’s restaurant.

The girls receive occupation, physical and speech therapy three days a week at Friendship Pediatric Clinic in Siloam Springs.

After the diagnosis, the Harris’ met with a developmental child psychologist after the diagnosis, to help chart a future for her girls.

The psychologist encouraged them to develop a list of things they wished to experience and make memories with their girls, to maintain a functioning, quality of life.

At times, Harris said, she likes to remember the Abraham Lincoln quote that states, “It’s not the years, in your life that count. It’s the life in your years.”

Home schooling has allowed Harris to tailor her daughters’ learning experiences to their physical, developmental and cognitive ages, rather than chronological ages, 7 and 4-1/2.

Harris said participation in the children’s ministry at Elm Springs United Methodist Church, in Elm Springs, Ark., provides her daughter with a social outlet and a network of friends.

Drew Harris will finish his second deployment since Alex was born in April. His first deployment, when Alex was an infant, was to Iraq.

With 11 years of service behind him and retirement less than 10 years away, Harris most likely will re-enlist for reserve duty. The Harris’ will take a future deployment as it comes.

“There’s no guarantee with life,” Harris said. “We just happen to know our [years] are shorter than most, so we’re enjoying the time we have.”What is Make A Wish?

Founded in 1986, the Make-A-Wish Foundation of the Mid-South, grants wishes to children with life-threatening medical conditions to “enrich the human experience with hope, strength and joy.”

According to information released by the Mid-South Foundation, the Make-A-Wish mission is about the life-affirming, hope-giving aspects of the wish experience. The words “terminal” or dying” are never used to refer to a wish child, nor do they emphasis a child’s illness, medical treatment or death.

Alex and Emma Harris’ wishes are among the 275 that the Mid-South Foundation plans to grant this year.

One of 65 chapters across the United States, the Mid-South group generally follows a fourstep process when granting a wish.

Children, between the ages of 2-1/2 and 18, who have not had a wish granted by another organization, are eligible for a wish. Medical personnel, parents or even a child can make a referral to Make-A-Wish.

Once the child’s acting physician helps determine medical eligibility - a life-threatening medical condition - the child (and his/her family) meets with volunteer Wish Granters.

The Wish Granters help identify and create the child’s wish. Wishes typically fall into four categories: to go (on a trip), to meet (a famous person), to be (a job/person) and to have (an item).

The average cost of a wish is $7,100. Seventy-eight cents of every dollar donated is allocated to wish-granting. Cash and in-kind contributions helps grant additional wishes.

During the wish, the Foundation covers all expenses, to give the wish kid and family a respite from the stress of dealing with the life-threatening medical condition.

For more information, call (501) 376-9474.

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