| Clues and The Backyardigans. She can often be found attempting to play her big brother Bailey's playstation, truthfully, she just likes chewing on the buttons and knobs. Her newest hobbies are driving around on a miniature BMW powered by her and putting her "babies" in her basket on her walker and taking them for a walk!! But her # 1 favorite hobby is spending time with her big brother Bailey and her Daddy!!!* |
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| Proudest Accomplishment: |
| Just being here!! Emma has been through so much since being diagnosed last April, less than one year ago!! Several surgeries for broken central lines, many unpleasant tests and procedures and the worst of it all having chemotherapy and a BMT to help save her life!! There were points during her treatments that I thought we couldn't go on, but Emma always helped push us on and get through it all!! It has been her strength and courage that has gotten us this far and will get us through anything!! |
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| MPS Heroes: |
| First of all, Emma's family doctor, Christine Schipper sent us to a pediatrician for an enlarged soft spot and it was from that referral that just a couple of months after we got Emma's diagnosis!! |
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| Our genetic counselor, Kathy Corley has had the biggest impact on Emma's care!! She has been there for us no matter the time of day, how petty the concern or repetitive the questions. If Kathy didn't know the answer she found it out for us!! Without Kathy, I am sure we wouldn't have been able to deal with Emma's illness or have gotten her treatment so quickly after diagnosis. Kathy is a true advocate for Emma's best interests no matter the costs or how much work it took to make sure Emma got what she needed!! She is an amazing counselor and an even better friend. |
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| Words of Wisdom: |
| When we first starting the path to Emma's diagnosis, we keep saying "there can't be anything wrong with her, their just can't be" But the closer we got to a diagnosis, we started thinking. Why not us, what makes us so special that everything was going to be fine!! |
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| But after going through all this, I can honestly say that we are special. God gave us this little girl that has touched so many hearts and made so many people believe that not only prayers get answered, but that miracles can happen!! |
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| Emma has shown us that we should never take anyone or anything for granted, to treasure everyday, every moment, every smile...because you just never know!! |
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| Emma is without a doubt one of God's little Miracles! |
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| Personal Diagnosis Experience: |
| We thought nothing was wrong with Emma, although she did have a "pigeon" chest and her facial features, especially her cheeks were "hard" not soft like other babies!! After the exam the pediatrician sat me down and started talking about possible "syndromes" that Emma may have!! Syndromes...what was he talking about!! He mentioned "mucopolysaccharidoses" as one thing he thought it could be!! Even with my nursing background I had no idea what that was!! He said he would send us on to a Genetic/metabolic specialist that could do more testing and figure out what was going on!! As soon as I got home I got out all my medical books and starting looking up MPS!! I was in shock that he could think that Emma could possibly have one of these horrible diseases!! |
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| After we went to meet with the metabolic specialist, Emma has numerous tests done. It wasn't until after the eye exam and the doctor told Jeff and I that Emma has mild corneal clouding that I knew!! Most of all the MPS diseases have corneal clouding!! I can't remember the last time I felt so scared or cried so much!! That was until we got her diagnosis!! |
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| It was April 20th, 2004. The first thing I said to the doctor was, just tell us its not Hurler's..because according to all I researched this was the worst of the MPS diseases!! The next thing she said was ...I am sorry but it is Hurlers!!! Our world fell apart in that office that day!! It was the longest drive home from London!! All I could do was think of all the things we wouldn't be able to do or experience with our prettygirl!! I have never cried or felt such heartache!! We had to pick Emma up from the sitters but as soon as I walked in and the sitter asked how it went...I had to leave...I just couldn't stop crying!! But something changed as soon as Jeff brought Emma out to the car!! I looked at her and I felt this calm come over me!! I somehow knew that she was going to be ok! Knew that we would, as a family fight for whatever Emma needed to help her get better and live the best possible life...despite of her diagnosis!! We refused to talk about the "what-ifs" and focus on the positives and find her the best possible care and treatments available!! |
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| Unfortunately none of us were matches to Emma's bone marrow so the search began of the national Bone Marrow Registry!! While we were waiting for a match to be found, Emma was lucky enough to get 10 weeks of ERT before her BMT! On September 29th 2005, Emma got her new Bone Marrow and we got our little girl back!! |
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