EMMA-LYNN
AKA
PRETTYGIRL

Click on this link to see
Emma's Quilt of Love





Welcome to Emma-Lynn's website. We have created it to keep all our family and friends updated on Emma and how she is doing.

Emma-Lynn Charesa Hardman, AKA Pretty Girl, was born on September 9th, 2004. She was eagerly welcomed by her parents, Becky and Jeff, and big brother Bailey. Mommy and Daddy had no serious concerns about her health but, with a routine visit to the pediatrician when she was 3 months old, they were shocked to hear otherwise.
After lots of trips to the city for appointments and tests, Emma was diagnosed with MPS 1- Hurler's Syndrome on April 20th, 2005 at the age of 7 months. MPS is passed on by a recessive gene from both parents (1 in 100,000 births). Emma lacks the enzyme alpha-L-induronidase. This enzyme is needed to break down sugars and without it the sugars get stored in various parts of the body including the liver, spleen, heart and brain. This build up can cause damage to the organs and, without treatment, lead to death.

There is no known cure for Hurler's but there are treatments which include Bone Marrow Transplant(BMT) and Enzyme Replacement Therapy(ERT). Both have been proven to be somewhat successful in stopping the accumulation of sugars in the body and helping to improve some of the symptoms of the disease. BMT has been shown to help the body actually produce the missing enzyme on its own thereby halting the disease progression and possibly reversing some of the damage caused by the sugar storage.

Emma had an unrelated bone marrow transplant on September 29th, 2005. She was over 90% engrafted with her donor's bone marrow on October 29th, 2005. Emma continued to have ERT weekly until December 2005 when the hospital would no longer cover the costs as there is no medical evidence to prove that ERT is beneficial post BMT. According to a blood test, Emma is producing more than adequate amounts of the enzyme her body was once lacking. Emma was able to come home for good on November 11th 2005. She still has a long road ahead of her but is getting stronger every day! She is a true inspiration to all who know her!!

For more information regarding Hurler's and other MPS disorders, visit the MPS Society website at
www.mpssociety.ca.


Also, please consider registering to be a bone marrow donor. For information visit the Canadian Blood Services website at:
www.bloodservices.ca

Thanks for visiting Emma's website.



You Have Taught Me

Author~ Anne Maclellan

You have taught me patience

to rejoice in small gains which others take for granted.

You have taught me tolerance

to accept that your perspective is different

and deserves respect.

You have taught me courage

to fight for you when no one else will.

You have taught me endurance

to go on when I feel I can't any more.

You have taught me humility

to accept when I can't make things better

but can only be here for you.

You have taught me to love

at a deeper level than I ever thought possible.
















I'D LOVE IT IF YOU TOOK THE TIME
TO SIGN MY GUEST BOOK.
THANKS

Journal

Monday, September 29, 2008 6:51 AM CDT

MONDAY OCTOBER 13th 2008

*** Please keep yet another MPS 1 child in your prayers!! Hailey Chavers is in intensive care with Strep-Pneumonia and is slowly getting stronger, but needs many prayers!! Her parents have already lost one little girl, ^^Makayla^^ to this awful disease!! Her caringbridge site is www.
caringbridge.org/visit/haileychavers

This is the 3rd child in less than a month that has been gravely ill, and with 2 passing away... It really hits home how devastating and life altering these diseases are, both for the children with MPS and their families as well!!
We thank God everyday that Emma is doing so well. Yes she doesn't talk, has many SMALL hurdles to overcome..But she is here with us, we can hold her and love her everyday and tell her how much she means to us, how much we love her!! What the parents of the children who have died from these awful diseases would give for one more hug, one more chance to tell their children they love them face to face, one more precious moment with their little ones!!
Please pray for the Chavers family, and all the families that have lost a child, or have a very sick child.
Thanks~~*****




****Please pray for the family of little Alyssa Louden, who also had MPS 1. She earned her angel wings this week. Her website is
www.alyssaloudenfund.com
Thanks~~***


****There are new pictures up!***






Happy NewLife Birthday Prettygirl!! I can't believe its been three years since you received the gift of life..a bone marrow transplant!!
You have come so far in the past three years, had many challenges and hurdles to overcome. You did it all with the strength and determination of a true hero.
You still have many challenges to face, but we will do it together!!
We have been reminded too many times how short life can be, and that you just don't know what tomorrow may bring. We need to love each other, cherish every moment, and tell those around us how much they mean to us everyday!!!
Emma, you mean more to us than you will ever know.
You have shown us, that even without words, you can tell someone you love them so much!! You can light up even the darkest day with your beautiful smile and contagious laugh!
We hope you continue to have as good of health as possible and that your struggles become less over time!!
No matter what, we are here for you and will be until the end of time!!!
Loving you more today than yesterday, but not as much as tomorrow!!!
Mommy, Daddy and Bailey!!

Read Journal History

Hospital Information:

Patient Room: My own room

The Hardman House

Hanover, Ontario

Links:

E-mail Author: bbjhardman@sympatico.ca

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.