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Name: RachelL
[ Original Post ]
My name is Rachel , Im 24 single parent with a daughter Aaliyah with spastic quadreplegia. I am very depressed and emotional about everything that goes on in my life. From feeling like nothing is accomplised with strecthing to coming up with the money for a handicapped van. Every day is a joy to see my daughters smiling face and happy eyes. I just need some guidance and some understanding that im not the only one going thru this. I have been trying to find a life insurance that will accept my daughter with her conditions and it is impossible. I am currently writing a letter to the VA Governor to see what can be done about this. It seems that the ones in need of life insurance and not ever allowed to any plan and is unfair. If there are any single moms that are going thru what i am, please feel free to talk to me and we can exchange our knowledge together.
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Name: sweetcaramalkiss | Date: Jan 30th, 2007 10:17 PM
Hello Rachel,

My name is Donna and I am a 27 year old mom of two my special needs child just turned four. I can completely relate to everything you are saying. I tried to get life insurance for my son as well and every company denies him. Its such a shame I dont know what to do anymore. I also am trying to get a handicapped minivan within the next year or so. I currently live on the 2nd floor with my 2 sons and husband and i have to carry both kids up and down the stairs in the mornings and afternoons for school its hard. Anthony has hypotonic quadreplegia which is just the opposite he is very floppy and has low muscle tone recently he has been rolling over which is a big accomplishment for him because I never thought he would be able to pass even that little milestone. But I just keep the faith and never under estimate him for a second, because he is my little trooper. 

Name: RachelL | Date: Jan 31st, 2007 3:15 PM
Yeah im too am trying to obtain a handicap van to accomodate her. But as of right now am unable to afford one. I live in VA and they have this program called Assistive Technology Loan Fund and they get you approved for low interest loans for these vans. But if you get a high percentage rate they will drop that by 5 percent. I have the same problem carrying her in the morning way to the car. Its very hard and stressful, I dont know what i will do when she gets bigger. I think by then i will not be able to work 

Name: bena | Date: Feb 13th, 2007 2:49 AM
Dear Rachel,

My Name is Ben Anderson and I am a full time disability advocate. After reading your comments I am very moved . I am in my early 50's and things haven't gone any better as far as the insurance side of the deal. But as you talk about getting an accessable van it seems to me that somebody in your community could begin a fund raiser and try to raise enough to be able to obtain a van. This would take a lot of advocacy on your part but it will be worth it in the long run. I would suggest on the other side of the insurance question that you consult with medicare in your state and see how they can help you. If you want to you can email through my website and I would be willing to do as much as I could to be of assistance. ----www.bendanderson.com
I know it has got to be very hard to get up in the morning to face the day's challenge but you must eremember that you are a mother has a very special child that needs you . For that I hope that will motivate you to be a happy and successful mother. Just think about the needs and how you can assist that child to have a better life. You are the successful link for that to happen and that will take hard work but in the long run you will thank God for this advise. I am a person that was born with cerebral palsy so my comments is the advise that I would give my own mother-- to be happy and thank God everyday for your child. 

Name: lindalu | Date: Feb 14th, 2007 7:50 PM
Hello ladies and gent, I can sympathise with you. My daughter was 19 years old when I was finally able to afford a ramped van. Befor the van I also had to lift her from her chair to place her in the vehicle, then manually lift her power chair in to the back! It was getting to cause a lot of stress on my joints as well. It is hard affording one I payed 52,000 for my van but I was able to get the loan for 15 years. On Ebay there are venders that sell portable ramps for a couple hundred dollars, they do help! I had one for a while it gave me more freedome to be able to just go. I didnt need to have another person assist me with getting her chair in the van. I could do it my self! Its not a total fix all but they sure do help especially if you have a 300 lb power chair to lift every time you go out! Good luck girls! I hope you can eventually find what you need! 

Name: Aisha | Date: Apr 18th, 2007 7:53 AM
My name is Aisha, and i have a daughter Aaliyah who will be turning 5 this year, she is a spastic quadreplegic. Last year I heard about a theraphy called ABR which stands for Advanced Biomechanical Rehabilitation. We started with this theraphy last year and she has made tremendous progress. If you are interested in learning about this theraphy don't hesitate to contact me, I can fax you copies of her progress as I don't have it on an electronic format, but just briefly before we started with this theraphy she was in hospital every 3 or 4 months with bronchial pnemonia, last year, thank The Lord above she did not land up in the hospital once and so far this year she hasn't been sick either. The theraphy abviously is not cheap and medical aid does not cover it, but then can one put a price on your childs life? I fortunately am not a single mom, i have a very supportive husband who assists me with the theraphy and two supportive children. We take it one day at a time and it is a joy to see her smile because her prognosis was not a good one, we were told she will never interact with others she will never walk, talk, sit etc, basically that she will remain in a wheelchair for the rest of her life. She could not hold her head up before we started with this theraphy, she alternates from being too stiff to low muscle tone, she can now hold her head up for long periods of time to the extent that her 11 year old brother can hold her on his lap and the two of them can watch a movie on TV. Her hands used to be clenched all the time to the extent that the skin started peeling on the palms of her hands today she can open up her hands like any other child. Please feel free to contact me if you would like to chat further or if you would like more info on ABR. My e-mail address is [email protected]
Kind regards 

Name: sweetcaramalkiss | Date: Apr 23rd, 2007 3:12 AM
Rachel,


hello again, just wanted to let you know I just got my handicapped vehicle and it is amazing. i live in nj so there is this organization called catastrophic illness fund and it gives u money towards the vehicle. I paid 38,000 for the vehicle it is a 2006 dodge grand caravan and it only had 16,000 miles on it. The way the fund works is there are 3 critieras live in nj for more than 3 months or a year not sure on the length of time, your child has to be 21 years or younger and it has to be more than 10% of your income based on a 12 month period. If u qualify they give u 100% of the conversion cost and 15,000 toward the vehicle itself. For instance my vehicle was 38,000 the conversion of the motorized ramp was 22,000 so they will pay the whole 22,000 in full. Then they give me 15,000 towards the vehicle which 38,000-22,000=16,000 so I will only be left to pay 1,000 for my vehicle a 2006 can u believe it I am truly blessed. I didnt know about this fund so I am trying to get the word out there. They also help will unpaid medical bills etc, as long as you meet the 3 criterias I mentioned above. Hope I was a help out there for someone...... 


Name: lindalu | Date: Apr 24th, 2007 4:37 AM
Rachel
If you purchased the van for $38,000.00 and it would cost an additional $22,000.00 for adaptations the total would be $60,000.00 after adaptations. You said they pay for the adaptations, so you would deduct the $22,000.00 that would bring you back to the purchase price of $38,000.00 then you said they give you an additional $15,000.00 toward the purchase price. So if you take the original purchase price of $38,000.00 and deduct the $15,000.00, wouldnt you be responsible for $23, 000.00? 

Name: sweetcaramalkiss | Date: Apr 28th, 2007 12:48 AM
Let me try to make this a bit more simple. My handicapped vehicle is already converted. The total of the entire vehicle already modified is 38,000 and now this organization is going to give me 37,000 towards the entire modified vehicle. 22,000 for the modification of it and 15,000 towards the vehicle itself......grand total of 37,000 which means I am left with a 1,000 balance to pay out of pocket 

Name: katfeet | Date: May 16th, 2007 8:59 AM
Call Easter Seals if you have one in your area. Sometimes they are able to help with a handicapped vehicle. They helped me get a lift for a van I had for my son. As far as the insurance goes I dont know anything about that. I wish you luck and if you need someone to talk to write me back. Kathy 

Name: lindalu | Date: May 17th, 2007 9:26 PM
RacheilL
Ok I get it! I was thinking that it had to be already adapted. Good for you! I'm glad you now have your van. It is so much easier loading a power wheel chair in a adapted van appose to a unadapted one. I had to do that for 15 years, and let me tell you it was not easy! 

Name: lindalu | Date: May 17th, 2007 9:32 PM
Sorry ladies I don't know where my head is! My last comment should have been addressed to Sweetcarmalkiss not RacheiL. 

Name: midgie | Date: May 27th, 2007 6:42 AM
My son has multiple diagnoses. His primary diagnosis is CP. He will be 14 years old in two months. He is legally blind, eats with a G-tube, and is a spastic quadriplegic (he does have a couple of other diagnoses, but those will do for now). Yet, I tell everyone that he is happy. I have developed a saying I tell people, “Men just think women are in this world to serve them, my son knows they are”. It took me along time to cope with my son’s disabilities, but I came to realize that if I was to be of any real benefit for my son, I had to come to grips with what I had to work with and find ways to work with his disabilities. Grieving for what could have been for my son didn’t make things better for him. My coming to realize that he was a human being with limited abilities did. I began to work with my son on his level. My son had sensitivity problems his first few years, but after awhile he responded well to touching, hugging, and knowing that I, or someone was near him to care for him. It takes awhile for the parent to adjust, but with patience and love, you will begin to see that your child is still a child that will respond in ways you will recognize. My son can’t communicate at all. He can’t speak, he is legally blind, and he does not have enough control over his body movements to learn sign language. He is also developmentally delayed. There is know doubt in my mind that he knows who I am (he turns in my direction). Sometimes noises confuse him and I need to rub my face against his and give him his special ear kiss before he realizes it’s me. I haven’t found a life insurance policy for my son. The next best thing would be a burial plan. I know that sounds grim, but it is pretty hard to navigate through the insurance policy’s offered and I know of none that will accept disabled children. 

Name: woini | Date: Nov 21st, 2007 5:37 PM
I also want to see govorner? My problem is, I also have a doughter who is 4 years on december. she has spastic quadreplegia I needed her to see a doctor who specialized on cp. but the isurance company kicked me out so I can't continue to find out what her exact problem is can we talk more? My phone 7038202661 

Name: sam | Date: Dec 11th, 2007 12:10 PM
Hi Rachel,
Ifeel for you, however, please have positive vibes around your daughter and have faith and do not give up. Have faith in God and all pray for his forgiveness and I am pretty sure. your daughter will recover fully.
I have a 5 year son with mild CP and I do the same.
wish you all the best and may god give you all the powers to you to heal your daughter.
Regards
Sam 

Name: Yogir | Date: Jan 26th, 2008 10:19 AM
Try InsuranceInMinutes.com. These guys got a life insurance policy for a friend of mine who has HIV. 

Name: Erica | Date: Jun 16th, 2008 5:47 PM
Hi .My name is Erica.I am a mother of a three year old his name is Matthew.He has cp and mr.I feel the same way you feel.I am very depressed also. There is days i dont even want to get out of bed the only reason I do is because of Mathhew I know that he needs me.I dwell in the past alot. I wish i could have done something different but I know I can't. His doctors tell me the same.It doesn't make me feel different about things.I have not found a ins either. 

Name: pop | Date: Jun 28th, 2008 8:55 PM
[email protected] 

Name: Zak | Date: Aug 6th, 2008 11:17 PM
I am a 14 boy I a spastic triplegic and I would like to IM you here is my e mail [email protected] Please e mail or IM me 

Name: lisasing | Date: Aug 7th, 2008 1:46 AM
Looking for a safer and easier way to meet other single parents ? Just join the largest single parent community www.soloparentdate.com for free. 

Name: Naruto33011 | Date: Dec 29th, 2008 5:11 PM
Gary is sopposed to get a special mission right now at this time 

Name: Margaret | Date: Feb 22nd, 2009 7:28 PM
My son is a twin and now 15. All of the companies will not give him insurance and he is healthy. His twin brother is the one with asthma and they will insure him. 

Name: charmaine galea | Date: Apr 26th, 2009 3:55 PM
Hi rachel,
My name is charmaine and i am from Malta. I also have a spastic quadreplegia girl named Nicole. She is 2 1/2 years old. Me too is depressed. The daily stretchings and massages are really tiredsome. Sometimes i even get that feeling that all is done for nothing. My little angel still does not have sitting balance and i am really looking forward and working hard for this to come. I would like to become your friend and exchange ideas if for you is ok 

Name: david ashworth | Date: Aug 9th, 2009 11:57 PM
need a van to carry a power weel chair and funding to buy the van.i am on a fixed in come after medication i have nothing much left.please set me free 

Name: Sarah | Date: Feb 24th, 2010 10:27 PM
I have a daughter who is 20 and pregnant.I'm getting old now I'm about 33 we have a very young and I think my daughter Kelly will manage very well.Now I hope she dosn't think I'm worried but this month she is due and she is having twins! I think she dosn't even need me anymore. :( she will never ever let me visit but at least she said she loves me evry day I think she does need me Yay. :) 

Name: Denise | Date: Dec 4th, 2010 3:10 AM
My name is Denise and I am a military wife as well as a mother of three kids, one of our kids is special needs, he was diagnosed with lissencephaly which means (smooth brain) he has chronic seizures, he is gtube fed and he is wheel chair bound, we are in desperate need of a minivan, we have a 2003 ford explorer that we bought in 2006 and right now it is only worth 6995.00 in excellent condition, we still owe 12600.00 and we have tried trading it in but we have s much negative equity no one will finance us, jr ia going to going into the hospital for the ketogenics diet, the neurologists think it might help his seizures, this diet is so intense they have to do blood work every month, they have to check his kidneys, cholesterol etc. we have to make frequent trips to children's hospital in seattle from fort lewis every month, if anyone has any information on an organization so I can get a van for my son please help thank you for your support Denise V :) 

Name: shaunz77 | Date: Jan 20th, 2011 10:04 PM
I have a 4 year old child with mild Cerebral Palsy as well as seizures and global developmental delays.

Please check out my blog:
http://johnsonspeci
alneeds.blogspot.com
Life
With a Child With Special Needs

Please pass it on if you know anyone interested.

Thank You,
Shauna Johnson 

Name: shauna Johnson | Date: Jan 28th, 2011 11:12 PM
My son Eric is 4 and has mild CP and seizures. I would love to help anyone in need...I started a new blog please take a look.

http://johnsonspecialneeds.

blogspot.com/2011/01/about-eric.html
 

Name: tanya boyd | Date: Apr 3rd, 2012 10:57 PM
i have a son that has cp and i cant get life insurance for him 

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