Monday, May 26, 2014

Sharing Thanks this Memorial Day


Sarah Begun original (circa. Flag 2014)
While many of us may be off from work today possibly going to a barbecue, going to the beach, taking advantage of shopping sales, or resting and relaxing with family and friends, it is most important for us to take time to reflect to remember and thank the millions of men and women who have risked their lives to protect our country, which helped to give us the freedom we have today, and every day moving forward. 
Lest we not forget, the men and women who continue to go to war and combat and who train tirelessly away from their families and friends to.

So before, in between, and after today's festivities, let's take time to remember with sadness, and pride, as Americans, the many souls who sacrificed their lives and continue to do so every day, and veterans who dedicated and continue to dedicate their time, energy, and attention for the love of their country, to help fight for our freedom.

Words of thanks go to all the men and women who commit themselves to protect our country, and for those especially who lost their lives in the war for freedom.

A special shout out to all of Sarah's grandfathers and Great Uncle who participated in wars doing various jobs from medic to enemy lines battle to keep our country protected and safe. And, even when the war was not won we know the effort to try was hard and intense.


My heart also goes out to the children, both young and old, whose lives were and still are impacted by their parent's bravery to fight for our country, and especially the time they have away from them in order to do so.  

Credit: H.D.B Photography
(a.k.a. Sarah's awesome Uncle Harold)
Today, let's memorialize, and honor, all who risked a great deal for our United States of America. Here are some special haiku I wrote, a drawing made by Sarah and a beautiful photo by Sarah's G-dfather and Uncle who lost a different battle -- to cancer. Let us commemorate and remember the commitment of so many and share our thanks and appreciation.

Memorial Day
Today, time to remember
Lives of many lost

To all men, women
Thank you for protecting us
Forever in debt

Thanks to those of you
Risking your lives to protect
Our USA

For red, white, and blue
Colors continue to sore
Time to remember

You're special people
With the biggest hearts of all
Thanks, infinity

Appreciation
To all the men and women
You mean a great deal

Much love and appreciation to all of you, men and women, and moms and dads, and everyone who dedicates their lives to protect our country. You are a special kind of people, selfless human beings who are looked at in the highest regard, for all that you do, sacrifice, and continue to risk each and every day, and we thank you to infinity.

You are forever in our hearts and we at Mommy’s Point of View want to say THANK YOU!!!


Thursday, May 1, 2014

Jackson’s Story of Life with MPS

I met a mom, Carrie Dunn, recently at our children’s parent teacher association (PTA) meeting. She stood up to talk about her son Jackson’s health and an event the school was hosting to help to raise awareness for the cause.
 
Jackson (on the left) was diagnosed with a disease called Mucopolysaccharidoses (MPS). It is a genetic lysosomal storage disease (LSD) that impacts 1 in 25,000 births and is caused by the body’s inability to use specific enzymes to break down and recycle materials in cells.
 
While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the build-up of cell materials. Jackson was diagnosed at the age of three.
 
There are numerous types of LSDs and the disease differs from patient to patient and symptoms vary in severity. In most cases a child receives a recessive gene from each parent.
 
For Jackson, he has MPS II, also known as Hunter Syndrome, and it is so rare that it effects 1 in 100,000 males. This form of the disease is also severe, progressing and life limiting.
 
Affected individuals will MPS may experience brain disability, cloudy corneas, short stature, stiff joins, incontinence, speech and hearing impairment, chronic runny nose, hernia, heart disease, hyperactivity, depression, pain and a dramatically shortened life span.
 
While there is no cure for MPS or related diseases, medical advancements are making great strides in helping to manage the disease symptoms. Currently there are enzyme replacements on the market and gene therapy, among other options. Bone marrow transplantation has also been considered successful for many; however few MPS patients qualify for this high-risk procedure.
 
My heart goes out to Carrie, Jackson and their entire family, and the many families coping with this life-threatening disease.
 
Carrie has a “Courage Page” on the website of The National MPS Society where she chronicles Jackson’s experience while also fundraising to support medical costs for her son, and towards future research. Jackson is currently on an enzyme replacement therapy to help with symptom management and disease complications.
 
Please join Mommy's Point of View, and others, as we help to elevate awareness for this disease and to support Jackson and his family. Donations are always welcome. Every little bit of attention and funding goes a long way.