I need some advice/assistance with my situation if possible!!!

I am facing a situation and I am not sure which way to go. After ten yrs at my job I was layed off Nov. 09. with this I also lost my health insurance. My son currently has medicaid but will definately be denied after 04-10. I have since found and re-established myself at a new job but wont have insurance for him and make too much to keep him on medicaid. I feel so helpless although he follows with the neurologist he is not on meds or therpay. PT alone was costing me 400 wk. I have a family of six and I am the only income. I dont make bad money and on paper it probably looks real good but no one takes in account that I have a family of six a son with Duchenes and another with Epilepsy with meds nearing 380 amonth. I feel like the only option I have is to sit back and watch my baby decline I have never felt so helpless. After a yr and a half he was found to be disabled by the social security doctors but when we went in for the "office" interview we were quickly denied for financial reasons. In Florida if your denied social security you are ineligable for medicaid. It is better to stay unemployed and live off the system because then you get it all. If your middle class and need help this state leaves you on your own. We already been to MDA and the chapter here is horrible. The dr we saw was so cruel to my son and yelled at my husband for tryin to help him with things we knew he couldnt do but the dr felt he could do. I am at the point that we have discussed giving guardianship of Kyle to my mom who is retired and could help him overall more than me and in Tampa she could get so much assistance. I feel horrible because I dont want my son to feel as though he is a burden or he is unwanted. At this point I feel as though I have no other option. We have been trying to get in to see Dr. Wong and have made contact and sent our records but that dream to get there is fastly fading because of the situation I am in. I want to never look back on this disease and say I wish i did, i wish i could of etc..if that happens I will have absolutely failed my son. I guess the help I need is does anyone know of any agencies that can help people like me in this situation or has anyone experienced this same thing? It is very depressing and sad to see you child decline and not help at all I am so worried about his posture and I have noticed a change in his spunkyness...It kills me to see this and not be helpful. I am a nurse by trade and have never not jumped in to offer help or care for a ill/sick patient until now and it is not because I dont want to jump in it is just so limited to what I can do. The feeling of helplessness is overwhelming and the feeling of not helping my own son makes me feel like a hippocrit. I appreciate any help or advice you all can give me thank you and god bless you all...stay positive that one day a break through and a miracle will happen for us all thats all I have at this moment!!!! ...:-)

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Comment by Perlita & Gordy Hains on March 3, 2010 at 11:33pm
wow- these are weighing heavy on your heart I can tell. Do you belong to a Church that you can call on? A Pastor for guidance? Local civic groups... kiwanis, lions,sertoma organizations may make donations to help you financially. I would call your local Chamber of Commerce & ask for a list of Civic groups in your area & start calling/writing letters to them. Not sure if you like to speak in public... but you may want to offer to speak to them & educate on DMD - hope this helps good luck perlita

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