I loved reading your story. I too am a mother of a MPSII child. My Matthew was diagnosed at age 5 and is now 22. He was already 16 when we began the ERT. By then there was irreversable damage done to his body. Matthew seems to be effected physically more than in the brain. He went to regular school, graduated under IEP and even held a job for short periods of time until the stress on his body became to much.
I am very jealous of your relationship with other MPS families. I am not a very forth coming person and tend to hang in the back of events. I know of parents and their children but have never became close to them. I don’t know if this is a form of protection or just anxiety.
I love your photos of Trey. They remind me of my own Matthew. I am so thankful you have be opportunity to begin the ERT at such a young age. Matthew doesn’t seem to be responding to the ELAPRASE as much as we have hoped.
I have the blessing of Matthew being able to tell me how he feels and he has the knowledge to tell us if he can tell the difference too. I pray for this same gift for you and Trey. There is nothing worse than not knowing how your child is doing.
Again, Thank you for your posting. God Bless
I am SO glad to hear from you. It is always nice being in touch with mums who have been down the road before me, to offer advice, thoughts, support. I am in touch with other families whose children are not responding favourably to Elaprase, I’m not sure if you are, but if you’re interested, I can put you in touch with them, just let me know. Where do you live? If you’d ever like to talk on the phone or Skype, please let me know. I would love to ‘meet’ you and Matthew as well. Thank you again for your post. It means very much.
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