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ok i think im replying back im no good at comps so.....


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  • ok i think im replying back im no good at comps so.....

    ok i just got the replys and let me start off by saying i ve ben crying all day this is really crazy this whole situation ... as i have said before i have no idea about this diesease but i do know my son ...i am going to see dr.maron dec.16 maybe he can tell me more about what s wrong with derrick but i cant see why he cant just go to regular school? he plays with his friends just like he did before, he goes up to the 5th floor to his best friends house , he dont look any diferent than he did before we found out he had this diesease, his heart dr. well i dont know what he knows but he didnt tell me anything except to tell him not to play on team sports and to drink water then before school started he said that he wanted him to take the elevator but his school dont have an elevator so he told them he could climb the stairs, but then the school said they didnt want to be liable for anything that may happen to him... so then his dr. sends another note to the new school ...that he needs the elevator and that he needs a short routed bus ride in a mini van to school which is only 6 min. away from our home so since this guy is the dr. and im just the mother i took his word for it....well he has been to school a total of 6 days this year 3 i took him and 3 times he sat on the big bus for 1 1/2 hrs. 3 times, so now i dont know what to do but then i keep speaking to everyone from the bd.of.ed.and they dont know what to do for me either but everyone keeps telling me to call someone else and now it is going into the 3 month of school and still i dont know where he will be attending or what to do ...i feel sorry for him because he already feels bad that he has this hcm but now this is even making things worse i finally called a lawyer and he will be getting back to me next wed. i think im going to have to end up homeschooling him after all... i just hope i can so it and that he can pass to the 7th grade...

  • #2
    Re: ok i think im replying back im no good at comps so.....

    Keep your chin up it does get better. Once you see a HCM specialist it will be better. Some doctors just want you to lay down and not do anything but others that understand the disease, can tell you more of the do's and don'ts. There are plenty of web sites and can go to for now to keep your son's school up to par. At least if he is doing some of the work at home then he won't be falling behind. Good luck.
    Life is too short to worry about the trival things in life, So live life to the fullest.


    • #3
      Re: ok i think im replying back im no good at comps so.....

      take a deep breath!!! slow down. everything feels like it is in a shambles, but it is not the end of the world. between the lawyer and dr. maron, everything will get sorted out. you can't fix everything all at the same time, so just focus on getting some schooling into your son while you wait and see what the experts can do for you. clearly the school board is not helping so ignore them until you have answers and ammo.

      take care. we are here for you.



      • #4
        Re: ok i think im replying back im no good at comps so.....

        Take it slow... Remember that he will in all likelyhood be fine... YOU NEED to get him back in school and get your lives on track ASAP. Use the links Lee gave you and work with the BOE to get things moving.
        Be well and KNOW that you are NOT alone, we are all here for you.
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)


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