When life throws you a curve ball…
…you hit it, and make a run for it!
Since 2002 I have earned a meager income on the internet. It started with www.earthfriendlygods.com and expanded into a network of green focused websites. As my life evolved www.earthfriendlygoods.com was transitioned to my sister, so I could focus on my family and other endeavors.
As I developed the Greener Network, I caught wind of social networking and latched on like it was the next big thing….turns out it was. I have a profile on nearly every social networking site and can explain social networking and how to be efficient and effective in 60 seconds. As everything was coming together….my hours and hours of endless research and interaction, building and planning – I had an epiphany – I was missing out on my children’s childhood. Sure I mastered social networking….but I hadn’t mastered my kids, the house, and ultimately life away from the computer. In late January, I decided to pull back.
Up to this point my earnings from the internet were doubling each month and were enabling me to afford the supplements and diet that Lucy needed to function normally. I could pay for the internet, the cell phone bill (so I could keep in touch with my older kiddos when they were out in the world), and little trips to the movies, dog food, gas for the mom taxi, and things that didnt always fit into the family budget. Luckily a website network like the one I built can somewhat sustain itself without constant attention – this is good since I was sorely neglecting it (to focus on my family). My income dropped and the increase I had been seeing over the last six month dissipated. I’ve always tried to be frugal…buying most of our clothes at the resale stores (and re-selling our old clothes), clipping coupons, conserving gasoline, water, a/c & heat, etc but there just doesn’t seem to be many more corners to cut to be able to do what needs to be done.
I am married to a hard working man who sweats blood to provide for his family to the best of his ability. He operates an automotive customizing business and up to last Fall it had been an adequate source of income. However, with the economy tanking people were less likely to splurge on their cars and his business began to dwindle down to almost nothing. We were struggling to pay the basic bills and the fact that I was able to earn money online while taking care of the kids and home, was vital to our livelihood. We had never been able to get private insurance for the kids due to Lucy’s pre-existing condition, luckily though, they qualified for state funded medicaid.
Fast forward to May…I was hit with the news that my 14 year old daughter who had always appeared healthy…has a genetic disorder called Neurofibromatosis II -AKA- NF2. This is a genetic disorder which causes tumors to grow on important nerves throughout her brain and spine. If she were to follow the ath of others with NF2, these tumors would eventually take her hearing, speech, vision, and one by one every other bodily function. If she followed in the footsteps of others with NF2 she would be lucky to live past 35 and her quality of life would deteriorate faster than any of us could imagine.
I came to the sudden realization that this disorder is very much like amyotrophic lateral sclerosis ALS/Lou Gherigs Disease….which is what I had watched my Dad suffer and die of just three years ago. This was something that made me come very close to a nervous break down. I watched my Dad whither away into a helpless man who wanted so badly not to burden anyone….but when you can’t talk, can’t breath, can’t eat, can’t walk, can’t go to the bathroom on your own — can not do anything but think on your own — there is no way to avoid the burden. The hardest thing was knowing doctors didn’t have any way to slow the progression, they didn’t recommend natural ways of treating the disease and basically said you just have to grin and bear it as your body shuts down piece by piece. This infuriated me. The only difference I could see between NF2 and ALS in the outcome was that NF2 robs the afflicted of their speech/hearing & vision. I can not and will not allow this to be my daughters demise.
I am now trying to pay bills, and take care of two special needs children. Monica and Lucy both require a special diet and supplements that cost approximately $800 per month, of course Medicaid doesn’t cover these. We are currently making a minimum of 2 trips to Oklahoma City per month to visit the OU NF Clinic. I am also, planning a trip to Houston to have Monica seen at the MDAnderson NF Clinic. While I am fortunate that I have family and friends there to provide me with housing while I am there, I will have to afford my gas, some of the food costs of feeding myself and my four children, and any other expenses that come up while I am there. I am also planning to take Monica to the National Institutes of Health in Bethesda Maryland. It looks like they may pay for our travel expenses, but incidentals (like food and transportation while there are not covered).
If you’ve made it this far, you have a grasp on the situation I am dealing with now. I have four children, two of which need a miracle (or two). …and I am struggling financially. My blog will now become a personal account my experience trying to heal my youngest daughter Lucy who is overcoming Autism, blindness, and an incomplete brain…. and my experience with trying to find a doctor somewhere who can give me hope that we can make Monica’s tumors go away and that Monica’s quality of life will remain good for a very long time. In the mean time I will have to continue to try to raise funds to afford the care that my two beautiful daughters deserve.
I have set up a donation page on ChipIn.com and I welcome any and all ideas for ways in which I can raise money to continue to seek out the best possible care for my girls. I realize many of your are in as difficult a financial situation (and many worse) as we are…and from you I especially, do not want you to feel obligated to donate any money. I welcome offers of ideas for fund raisers, hugs, encouraging words, I am open to any and all help.
If you can spare a dollar or more to help….I really truly appreciate it – it adds up, so every little bit counts!
Here is the story of how we came to find out about Monica’s genetic disorder (its a doozy)
Here is the ChipIn page where you can donate if you are able.
Here is my email address amie.c.nguyen@gmail.com if you have any suggestions or ideas for supplements, alternative treatments, specialists that might be able to help, ideas on how to raise funds, or just simply words of encouragement – every single bit of support helps and is appreciated more than you can imagine. I have always enjoyed being a giver and can’t recall a time when I have felt compelled to ask for help, until now. I hope you all know that in my past I have tried to do whatever I could to help others and I will continue to do that where time and opportunity allows. I intend to be sure you all know how grateful I am to you for being there for me and my family in our time of need. I hope with all my might that you never have to experience anything like this, but know that if you do – I will be there to help you through.
If you have a moment to pass this information on to your friends/contacts I would really appreciate it. Post it on Facebook, Twitter, your email contacts, anywhere you think there might be someone willing or able to help.
THANK YOU!!
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One Response to “When life throws you a curve ball…”
Kala
Thursday, 18th June 2009 at 1:32 am
Amie, you’re awesome. Have you contacted the Oklahoma Brain Tumor Foundation yet? I am applying for my mom for a grant for rent and utility assistance-etc right now. She is in dire financial shape and losing her health insurance coverage July 1st and her long-term disability coverage through previous employer was denied last week. We were counting on that check each month and now she is at super poverty level (surviving on SS) so I am in a similar place as you as far as trying to find creative ways to come up with money to help her! Anyway the OBTF gives up to $1000 per year per family for bills, medications, co-pays, expenses-etc. They are super nice and helpful on the phone at the OKC office. I’m not sure if Monica would qualify but it’s worth a try. Good Luck Sweetie!