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

Thursday December 4th, 2008 11:46pm CDT

Saturday December 27th 2008
****Please, if you could keep Hannah Salcher, and her parents in you prayers! Hannah is unfortunately at the end of her brave, courageous battle with MPS and all the complications from her Bone marrow transplant. She and her familly really need your prayers at this most difficult time. Once again this reminds us how devastating MPS can be and to never take any day, any moment with our loved ones for granted!!!!! You just never know!! Hannah's website link is as follows
www.carepages.com/carepages/HannahEileenSalcher
Thanks in advance!!! ****

******NEW PICTURES DEC 7TH******



It has been so long since I have done an update and since I can't sleep I thought I would at least start a new update as I am sure this will make me very tired :)
So much has gone on in the past few months that I don't quite know where to begin!!
Emma started Junior Kindergarten in September. She has a full time EA( educational assistant) and is only going for 2 hours presently. The reason for this, besides MONEY, is that Emma's school does Nutrition breaks and recess instead of 3 recesses and lunch. The first break is at 11:10am and since Emma is STILL not eating and has seemed to develop a sensitivity to certain smells to the point of almost vomiting, we thought it would be best for her not to be there over that time. With Emma still not sleeping well at night, she is quite ready to leave at 11am. We are, in the new year, going to try her over the nutrition break away from the foods of the other kids and instead of going out for recess, she will have physio for that time, but this is all tentative as they need to see if they have it in their "budget" to pay for Emma's EA to spend another 40mins with her. Speaking of Emma's EA, Marie is wonderful. They told me before Emma started that she was very "grandmotherly" and I thought...Oh God, just what Emma needs another Grandmother. I thought Emma should have some young thing that would be both kind and tough with Emma to help her reach her full potential but Marie has proven me VERY wrong and has become like another Grandmother for Emma. Emma just loves her and I have grown very fond of her myself. She is patient and kind and Emma trusts her, and loves her and that is all that counts. I do still think that once Emma gets a little more used to school(she goes 2 days one week, 3 the next and with doctors appts and being sick I think she has missed more than she has been there), that Emma will need someone to push her and help her develop more independence and do all that she can. But for now, Marie is just what Emma needs.

Bailey is in grade 5 now, and is doing well. We have our parent/teacher interview tomorrow and we will see how that goes. He is quite the little talker and gets distracted easily!! He really needs to work on that, but he is 10..he will grow out of it. Someday!!
Bailey has been taking guitar lessons since September and is liking it very much. He always complains that he is not very good, but I have told him 100 times that if he actually practised, he would be getting better and better. We haven't signed him up for the next semester of lessons yet and if he can't prove that he is still interested, by practising daily, he will not be taking lessons in the new year!! So we will see.

Emma has a few doctors appts over the past few months and all went well except her cardiology appt. She has always had a very mild Mitral Valve Prolapse but it didn't seem to be causing any big issues with her heart so they have just been monitoring it. Her heart was a fair bit enlarged prior to her hole in her heart being plugged and last November 07 the size had gone down considerably. This time it was enlarged again, and the prolapse has gone from Mild to Moderate . This means Emma is now on heart medication twice a day to try to lower her blood pressure so her heart doesn't have to work so hard, which will hopefully help the mitral valve prolapse keep stable and she will not need to have it replaced...which would mean open heart surgery. We go back in 5 months and, if it is worse, the surgery will be booked. If it's stable, we will continue with the medicine and return in 6 months as long as she remains asymptomatic. I have been praying every day that the med works and the surgery will not be necessary but I guess time will tell.
She also saw her ortho doc in November and everything is the same. They are going to keep on eye on her back as her scoliosis has gotten just a tidge worse, but nothing too drastic. Her hips aren't normal, as mostly all MPS kids have hips issues, but they aren't causing her any problems but will be monitored. Her doctor is please with how she is doing bone wise, and we will be seeing him yearly now, unless there is a problem. Oh, he also feels that Emma will always have a tight right Achilles tendon and that we need to continue with the splint as much as possible to try to keep it as loose as it is now!! She does wear she splint to school, since it’s the only way we can keep her winter boots on, and she does tolerate it for the entire time.
We also had our bi-annual visit with Emma’s genetic doctor and got to meet her new doctor, Dr. Raimon, who has been shadowing Dr. Clarke for years now. He seems nice but Dr. Clarke ran the show at her appt, showing off for all his “followers”. (Just kidding) He has certainly changed his tune about why he feels Emma is not talking or eating. It's now “behavioural”. She is manipulating us all and controlling the two things in her life that she can control!! I am not sure if I totally agree with him, but I do agree that she does have some “behavioural” issues and can get what she wants, when she wants without the use of words. We have been using a communication board at school so she can point to what she wants to do, and the EA can show her what is next and what they are doing. She likes to have choices, and its good for her to be able to have the option of having choices and knowing what to expect in her day. We at home are not so good at using the board. We know what she wants without using pictures or words. We need to start using it more so her communication is consistent no matter where she is. That’s our “behavioural” problem that we have and need to work on!!

Emma is growing well. She is between the 50th and 75th percentile for her height and 90th for her weight. Her joints are “near” normal according to her doctors which is great. Her hands are good, no clawing. All and all she is doing really well health wise, except for her heart. She has no issues with her respiratory system and no ear infections (knock on wood!!!) We are so happy for all of that and we pray that the heart medication will keep her prolapse stable and that heart surgery WILL NOT have to be done any time soon or at all!!

Well, I think that is pretty much it for now. If I think of anything else I will add it in, but I think this entry is more than long enough for this time.
I would like to thank you for checking in on our Prettygirl. It means so much to us!!
We wish you all a Very Happy Holiday Season and nothing but much Health and Happiness in the New Year!!!
Take care~~ Becky

Read Journal History

Hospital Information:

Patient Room: My own room

The Hardman House

Hanover, Ontario

Links:

E-mail Author: bbjhardman@sympatico.ca