Dakotah's 2 wishes

Dakotah has 2 wishes - 1. Live Longer and 2. Meet Bon Jovi

I can't do much about her first wish, except to take the best care of her I can - take her to all her doctor appointments, give her medications, etc. but I can try my best to make that second wish come true.  Thanks to wonderful listeners of Tom and Dan's Mediocre Time Podcast, we have a hotel for the 3 nights and we also have had money donated that I'll be able to use to eat, etc.  One of my co-workers (I teach) actually put the airline tickets on her credit card until I can pay her back.  I also have to sincerely thank my true Jovi sisters who have stuck with me through this whole ordeal and have donated to help make it possible for us to get to Toronto - one step closer to making her wish of meeting the band come true.  I won't name them individually but if they read this, they know who they are.  :) I also have to thank my best friend of over 25 years for ALWAYS listening to me and being there for me to cry when things have been bad and take late night calls when I've been excited about something to do with this trip!  She knows who she is too.

Now if I can just get someone from the band, newspaper, news station to read the few most recent posts on this blog and get word to Jon and the guys, Dakotah's 2nd wish can come true.  She even has a little present for each of the guys.

I am feverishly emailing anyone I can find online that could possibly help.  And I'll be tweeting this blog address over and over and over in hopes it finds it way to someone that can MAKE IT HAPPEN!!!!!

Traveling from Florida to Toronto alone with a child in a wheelchair who is totally nonambulatory will be difficult, but she's worth every drop of sweat and every twinge of back pain.  I love Dakotah with all my heart!!!!!!!

The Details Behind the "Grant-a-Wish Catfish"

PLEASE help make a wish come true for teen with 3 life-threatening medical conditions.  Some of you may have seen my post back on 8/25 about this (and thank you so much to those who have already donated) but now I have more details that I can share with you.  I wanted to verify things before putting them in writing.  This post is a little lengthy but I feel compelled to tell you details so neither you nor any of your loved ones will be a victim of something like this like my daughter was.  I hope you’ll take the time to read it.

My daughter, Dakotah, has Aicardi Syndrome (neuro, epilepsy, scoliosis), Hyperoxaluria (liver/kidneys), & now Wolff Parkinson White Syndrome (heart).  We met a wonderful group of Bon Jovi fans through the Bon Jovi app & then became a part of a “Jovi sisters” group on Facebook. On 06/30/13 in our group chat, I was discussing how Bon Jovi’s music has positively affected Dakotah (she makes sounds to their music when it’s on – she can’t talk – I will probably never hear “I love you” from her). A member of the chat told me I should contact “Stacy Summers” because she might have a way to contact Richie (Sambora). Please note that everything in quotes came directly from messages from the people named.  I, in no way, made anything up. I also want everyone to know that the person contacted regarding the airline tickets (below) nor Richie Sambora had anything to do with this in a bad way.

Going back to 6/30/13, I contacted Stacy right then via private chat & after asking a few questions, she told me to hold on.  She came back in approx. 15 min & stated, “Ok you are in you will have tickets to the Vegas concert and the backstage VIP to meet the boys. And it's all coming from Richie Sambora he will be contacting me in the next for days to get address and more details”.  I even asked her about it again on 7/1, & she stated, “Yes he will make sure plus you will have your tickets VIP Backstage before that .So you're good”.  Also on 7/1 from Stacy, “Richie said he will contact me in the next few days with details and all” and “Everything will be perfect Richie is involved so it will be like a dream”.  I told Dakotah & this was her reaction to my friend talking to her about it - http://youtu.be/tSTuZ8yBbus.  On 7/4 Stacy then stated, “When Richie comes back to the states I will ask him to write some sort of letter so everything will go smoothly for our princess ... Everything is good for the two of you”.

On 7/2 I asked her via chat about a post I saw on her wall about the airline tickets.  She responded, “Yes he (Mike) contacted SW and told them what's going on SW promise him they will give our little girl Royal treatment. She will not be getting out of her wheelchair by TSA. TSA is going to allow her to remind seated. She will be taken care of with love.”  She also stated on this same date, “Now what Mike is trying to do is see if SW will donate the Airline tickets but I didn't say a word until he pushes his weight in there and confirm it”.  On 7/3 Stacy stated, “I'm seeing Mike tomorrow so he will have all details” & then on 8/8 she stated, “Jennifer, Mike is going to send you the Airline tickets he ask me if they were purchase yet.”  I asked again on 8/21 about everything because I had not received anything in writing & she stated, “I'm going to call Richie not sure how mike is doing it I will call him this eve”.  I tell you all this bc I finally private messaged Mike myself on 9/4/13 to ask him about his role in all this.  He replied (condensed version), “I am also so sorry for the mess you and your daughter have gone through. I was contacted by Stacy Summers and asked if we could provide free tickets for a Make-A-Wish child. I advised Ms. Summers, whom I have never met, to contact Southwest Airlines and did not hear anything further. I never offered to buy tickets and in my last communication with Stacy Summers, I told her I was not comfortable with the accolades being spread across Facebook because I didn't feel I deserved the recognition having done nothing more than refer her to another carrier. I have never heard anything more about this since she last told me she was handling everything. Until this note, I didn't even know the details of the trip, where it was going or anything about Bon Jovi. Again, God bless you and your family. This is very disappointing Ms Summers did this.”

Stacy exploited my 15 yr-old daughter by having me take a picture of my daughter holding a sign saying, “Thank you Mr. Mike…..” I did this on 7/12 after receiving this message from her, “I already did it. I handwritten on a piece of paper. Thank You Mike M. with me holding it up to the camera and sent text it to him. I was just wondering if you would like to do one so I can send it to him on his cell.”

Vegas is totally out of the question now due to time and money; however, the Toronto show on 11/1 is what we are shooting for.  Someone has already donated the hotel for the 2 nights and the airline tickets were so obtained (after the original posting of this post).

There are 2 ways you can donate – Paypal is one & the email address is dollar4dakotah@gmail.com.  The 2nd way is postal mail – Dakotah Hughes, c/o Jen Hughes, P. O. Box 92974, Lakeland, FL 33804.

Thank you in advance and please feel free to share this message with ANYONE !!!!  Also, if you have any questions, please do not hesitate to contact me.

Dakotah was victim of a "grant-a-wish catfish" We need your help to raise airline and concert ticket $$.

If you watch MTV, I'm sure you've heard of or watched the show "Catfish".  A catfish is basically a person who creates an online profile (Facebook, Twitter, dating websites, etc.) that does NOT have their picture.  They usually find pictures online from other websites or profiles and use those as their's (including family members).  Usually these "catfish" are out for love relationships.  Well, Dakotah and I have fell prey to a "catfish".  That is the only thing I can think to say about her.  We met through a Bon Jovi chat room on Facebook.  Back in June I was merely talking about how Bon Jovi's music has affected Dakotah (you can read previous post in the blog about that).  Well, someone else referred me to this person saying that she "may surprise me with who she knows".  Apparently the catfish (I do not want to use her name at this time - that will come later) has a FB profile that has her portrayed as someone she may not be - also not using her name because none of this was her fault. She apparently used a different name in our chat to "protect her celebrity identity".

On 06/30/13, the catfish told me in chat to "hold on while I make a phone call".  She came back approx 15 min later and stated that she had spoken to Richie Sambora (a friend of her's also stated that she got Richie to donate $50,000 to MAWF) and that Dakotah was being given VIP tickets and backstage passes to the Las Vegas show.  The catfish even had me go into our Bon Jovi group chat and tell everyone (this still blows my mind).  A few days later the catfish even said that the airline tickets were taken care of and that Dakotah would be treated like a "princess" at the airport and by TSA.  I told Dakotah and began making plans.

Fortunately I figured out in time that the catfish wasn't who she said she was.  I confirmed this through a relative of the celebrity she portrays herself to be.  I also confirmed things about her family to prove that she isn't who she has people believing she is. Furthermore, I confirmed with her "friend" that was taking care of the airline that he had no knowledge of the details of the trip (destination or that it involved Bon Jovi).  He further stated that he had never even met this person.  I did other research that I won't disclose at this time but trust me when I say, she victimized my daughter and is a "grant-a-wish catfish"!!!!!!!!!!!!!!!!!!!!!!!!!

I did not seek her out - she sought us out in that chat and since someone else vouched for her, I had no reason to doubt at the time (plus I guess I was blinded by the joy that my daughter would get to meet Bon Jovi and they would get to meet a teenager who has been touched so much by their music that she "sings" (make noises) to their music even though she cannot talk.

So, the Vegas trip was too expensive to raise money for so that is why it has been changed to Toronto.  I am making contacts daily to try to make the meet/greet happen.  I am posting on Facebook, Tweeting, emailing, etc. anyone and everyone I can think of.  I HAVE to make this happen for Dakotah.  I cannot go through Make-a-Wish because approximately 5-6 years ago Dakotah received a wish and it was a t.v. for her bedroom and dvd player for the van.  I have found a local radio station in Toronto that I will be contacting this week.  But I have to raise the money to get us there first.

If you can pass this along, I would greatly appreciate it.  November 1-2 isn't that far away.  I still have to raise $365.20 for the roundtrip airline tickets (they cost $515.20 but just received donation of $150 today).  I have try to raise this money quickly before the non-stop flights at that price sell out.  Since she has rods in her back, she really needs to fly nonstop.   I also have to raise $700 for the concert tickets (5th row due to vision issues she has) and $300 for the hotel (we have to be close to the venue the night of the concert so I have a place to get her out of her wheelchair to change her diaper, etc).  She has visual impairment so she needs to be on the floor as close to the stage as possible but she cannot stand/get out of her wheelchair.  I will stand the whole time - who sits at a Bon Jovi concert anyway, right???

There are 2 ways to donate - I have a PayPal account - if you have a Paypal account, you can send to her Dakotah's account at dollar4dakotah@gmail.com.  I have also set up a post office box if anyone wants to remain anonymous or doesn't have PayPal.  That address is Dakotah Hughes, c/o Jennifer Hughes, P.O. Box 92974, Lakeland, FL 33804.  

One more life-threatening medical condition to add to the list...Wolff Parkinson White Syndrome

Well, Dakotah was diagnosed with Wolff Parkinson White Syndrome last Thursday but it has taken me this long to be able to type it because it makes it more real.  I am still digesting that now her heart has a genetic defect.  I still don't know everything about it so I won't even try to explain it.  The best thing for me to do at this point is to refer you to the web to find out about it.  The cardiologist said that for now we will monitor her since she is non-ambulatory.  If she were a "typical" 15-year-old, they would do an ablation procedure that would prevent her heart from having irregular rhythms and accelerated heart rates.  What concerns me is that her heart rate increases when she has her nightly seizure (or any seizure) so if her heart kicks into an even higher heart rate during a seizure, she could go into cardiac arrest.  I was told by the cardiologist that if she goes into the 170s, then to call 911.  Luckily I have a pulse oximeter so I can monitor her heart rate and it alarms very loudly so it will wake me.  For now we wait for the 24-hour holter monitor results to see if she needs to be put on any medications.  They want to try to avoid any more meds since she's already on so many for the epilepsy and Hyperoxaluria.  Sometimes I just ask myself, "When will enough be enough for her?"

Trying to grant a wish for Dakotah....Will you please help?

Please help grant the wish of 15-year-old Dakotah to meet her favorite band - (Please share if you can)

Back in July, a wish for my daughter, Dakotah, was started by someone met through Facebook – to meet Bon Jovi. Their music has touched her so profoundly that even though she cannot talk, she “sings” to their songs when she hears them.  This wish included going to the MGM to see the show and meet the band (airline tickets, concert tickets and the backstage passes).  She was so excited when I told her.  However, as of today (8/25), the airline and concert tickets have not been taken care of.  Meeting the band is already being seen to.

You see, Dakotah has several terminal, life-syndromes (Aicardi Syndrome, Hyperoxaluria, and Wolff Parkinson White syndrome. There is a very, very high probability that she will not be living the next time Bon Jovi tours.  

I’ve reserved the hotel room at the MGM (concert venue) by using my summer school pay. However, I need to raise $1270 for airline tickets (due to having rods in her back and being wheelchair-bound, she really needs non-stop and this is a non-stop flight through Southwest) If someone has miles that they can use to help us with the tickets, that would be great.  No other airlines fly non-stop.

I need to raise $502.15 for the wheelchair accessible concert tickets (these are floor seats so she can be as close as possible due to her vision impairment and hopefully they’ll move us closer).  I have set up a Paypal account just for this wish for Dakotah – if you give as a gift there is no cost to you or to Dakotah’s Paypal account.  If by some miracle Bon Jovi’s organization gives us the tickets, I will promptly send back the money to those who donated.  I am not doing this to “make money”.  The Paypal acct email is dollar4dakotah@gmail.com.  (If 888 people donate $2 each we will raise the money for Dakotah’s wish!!)

Here are links that I wanted to share with you –

YouTube videos of her “singing” to Bon Jovi’s music –

http://youtu.be/5tJtNnWVgy4   http://youtu.be/5tJtNnWVgy4  

http://youtu.be/W0BrdSZzI_s    http://youtu.be/V-05TqsFzvQ

Here is the video of her reaction to going to Vegas to meet Bon Jovi – http://youtu.be/tSTuZ8yBbus

The blog address that I have for her – http://singlemom2preciousgirl.blogspot.com/

You may ask why Make A Wish Foundation is not involved, well, Dakotah had a wish from them before she was touched by Bon Jovi’s music and they only do one wish in a lifetime.  Also, flight organizations such as Angel Flights and Operation Lift Off only fly patients for medical appointments. Please trust that I have explored these options prior to putting out this request. 

I THANK YOU in advance for ANY assistance you can provide to me to help me make this wish come true for my daughter. I love her with all my heart and it hurts my heart to think this may not happen for her. 

Jen 

Bon Jovi isn't just for me anymore!!!! :)

It's been such a long time since I've posted here that I decided it was time to catch you up.  We have moved back to the county I grew up in (and now back in close contact with my high school best friend).  I am still a teacher but part of the leadership team at my school and I have more leadership responsibilities.  Guess I'm trying to get ready to have my doctorate in Educational Leadership this August.  It's been a long 3 years but it's almost over and I will glad - I'll spend that extra time snuggling with my sweet girl.  Speaking of sweet girl, this blog is about her so guess I should get on to updating you abut her.  

(While knocking loudly on wood) - she has been doing well.  Had to change all her specialist and her pediatrician since we moved but I am happy so far with the ones we've seen so far.  She's up to 103 lbs. so I now have a lift for her (haven't tried it yet - still waiting on correct sling for it).  Need to see new nephrologist so we can retest her urine to see how the medications have been working on her Hyperoxaluria.  She hasn't had any stones lately (another knock on wood) so hopefully it is working.  

As you may or may not know, I have been a Bon Jovi fan since high school - when they first came out - and now you should see/hear the positive impact that Bon Jovi's music has on Dakotah.  I used to play classical music CDs for her at bedtime to stimulate her brain.  Well, I decided about 2 years ago that I was going to start playing Bon Jovi CDs for her.  OH MY GOSH - she immediately responded by making such loud noises ("singing" for her).  I finally was able to capture it on video & posted to Youtube (http://youtu.be/cRnizUe5Ju8). Last night I fogort to turn it on and when I went back in her room to turn it on, I said, "Dakotah, I'll turn on your Jovi now" and she got the biggest smile on her face.  I really do wonder how much of what I say she understands - I think more than I even remotely realize.   

Before my time with her is gone, I took her to a Bon Jovi concert.  It was such a moment.  We tried so hard to meet the band but had no luck.  They did drive past us in their van when they arrived to the venue, but didn't stop or come out.  I'm praying desperately that I win a contest on Ellen Degeneres' website for 2 tix to the NJ show and most importantly a MEET AND GREET!!!! Oh gosh, this would be a wish come true! I would give anything to have a picture of Dakotah and the band! 

Well, have to get to work on that dissertation so I can graduate on time! :) 

Another diagnosis to deal with.....

Well, we are dealing with a new diagnosis as of March 1st.  Dakotah has a genetic disease/disorder called Hyperoxaluria (detailed info can be found at www.ohf.org).  Basically her liver is missing an enzyme and this is causing too much oxalate in her body.  She will have to undergo a liver biopsy to determine which enzyme is missing and that will also determine if she has Type 1 or Type 2.  She currently has her 2nd kidney stone (1st one was when she was 8 yrs old) and this time her pediatrician referred her to a nephrologist 1st instead of directly to a urologist for treatment of the stone.

The nephrologist wanted to find out why she keeps getting stones (the first stone was attributed to her seizure medication, Topamax, since that is a side-effect - although now we know that was not the case).  Thank goodness he wanted to do further testing.  She was cathed and had a foley for 48 hours to collect 2 24 hour urine samples.  There were several issues with the results but the most significant one was her oxalate levels.  Everyone excretes oxalate in their urine - it is a byproduct of metabolism; however, the normal levels should be 20-40 mg/24 hour period.  Dakotah's levels were 134 mg (1st 24 hrs) and 120 mg (2nd 24 hrs).  This is very, very serious and this is what is causing the kidney stones.  This will also eventually lead to calcification of the kidneys resulting in renal failure.

The only "cure" is a liver transplant.  All the literature says that a pre-emptive liver transplant is best because the person can keep their own kidneys if the bad liver is replaced with a good liver before renal failure.  If she has Type 1, the Dr. is going to try her on prescription strength Vitamin B6. This has been found to be effective in reducing the oxalate levels 30% of patients for a period of time, but transplantation does end up having to occur, it just buys some time.  If the oxalate ends up getting into her blood, it can get into her organs (including the heart and can cause heart issues).

For now she is on almost continuous fluids (including water throughout the night).  This won't reduce the amount of oxalate being produced but will at least hopefully get it out her body faster so it doesn't have the chance to form more stones or calcify her kidney(s).  She is also on 2 new medications/supplements 2x per day - Polycitrate K and Calcium Carbonate. She will see a urologist to have the kidney stone broken up into pieces via Lithotripsy (a same-day procedure done under anesthesia) so she can pass it.

We see the nephrologist again on 3/20.  I have so, so many questions now that I have researched this horrible disease.  I know this will sound terrible, but I thought 14 years ago that my sweet girl was given her death sentence when she was diagnosed with Aicardi Syndrome.  Now I am devastated knowing that the Hyperoxaluria is actually a faster death sentence and one that is almost certain if she doesn't get a liver transplant.  Please pray that they don't try to exclude her from having a liver transplant because she has Aicardi Syndrome.