It was an incredible night with about 200 people there, mostly MAW’s major donors.   We were at the “kids table” which was great because we got to meet the other wish children and their families who were being featured that night.  I was worried about giving my speech because I had practiced it earlier in the day and couldn’t do it without breaking down in tears.

But I did give the speech.  With Ethan, Abby, and Daddy right on stage with me.  With a huge screen with photo montages of Hannah and our trip playing on the side of the room as I spoke.    I broke down during most of it, and looking back, I should have had a tissue or something up at the podium.   Abby and Daddy were also tearing up during my speech, with Ethan being his stoic self taking it all in.

And although I didn’t pay attention to the audience because I was so focused on getting my words across, Daddy and a few other people told me that many in the audience was in tears and glued to the photo montage during my speech.   After the speech, Abby and I went out into the hallway for a good cry.

It felt so good to tell Hannah’s story, but it made it so raw again and made us miss her that very moment so much.

Anyway, here is my speech.

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This picture captures our entire trip!

Thank you for inviting us here tonight to share our story and to share why our daughter’s Make-A-Wish trip was so important to us as a family. 

(Mickey/Hannah pic).  This is our daughter Hannah meeting Mickey Mouse.  I’m sure that all of you have seen similar pictures like this hundreds of times over the years.  Meeting Mickey Mouse is the highlight of almost every child’s visit to a Disney Park.  But this picture tells so much more of our story than a simple meeting with a character.

Our daughter, Hannah, was born with Neuronopathic Gaucher’s Disease, an extremely rare and genetic metabolic disorder that degeneratively affects the neuromuscular parts of her body – movement, breathing, intellectual ability, everything.  There are only 50 children in the U.S. with this disease.  There is no treatment, no cure.  We were originally given a prognosis of 9 months, then 18 months.  

Hannah had her own plan.  She was with us 3 years 4 months.

Hannah’s condition affected our entire family’s lifestyle because she required 24/7 care, especially in her last year when her disease progressed to the point where she was considered “medically fragile.”   Developmentally, she never progressed to more than a 12-month-old.  Ethan and Abby never complained about the activities that they had to miss out on or the extra time we spent with Hannah. 

They were right there, front and center, helping take care of their little sister.   They would sing her favorite songs, read her favorite books, and had a way of making her smile and laugh so big.  Hannah was in love with her big brother and big sister.

Whether we needed them to add formula to her feeding pump, grab some trach supplies, or just lay with her while we had to get her meds…they always did it without having to be asked a second time.  Now that I think about it, it has been the only time that we have not had to ask them more than once to help out with something!  : )

Hannah loved Mickey and Minnie Mouse.  She watched the Mickey Mouse Club House every day, multiple times a day.  It was our go-to video when we had to keep her entertained while waiting for doctor’s appointments, procedures, going to dinner, etc. 

The day Hannah turned 2-1/2, I called Make-A-Wish.  I wanted Hannah to see Mickey Mouse in person.  I wanted to see what her reaction would be.  By that time, her disease had progressed to the point where she could no longer crawl, no longer sit unassisted, and she had lost the ability to grasp on to her toys…things she could do just a few months earlier.

We met with the wish granters just a few weeks later, and within just six weeks, we were headed to Disney World and Give Kids the World in Florida.  Hannah really had no idea what she was in store for, but Ethan and Abigail had been flying high for weeks in ancipation of this trip.  Because this trip wasn’t just for Hannah.  This trip was for the five of us to just have fun and be a family – no doctor visits, no therapies, just the five of us. 

But for Hannah’s Daddy and I, we knew this trip was so much more.  We knew that this would likely be the last time we would be able to spend this kind of experience together with all three kids.  Hannah’s condition was getting worse, we knew this was our once-in-a-lifetime family trip.   We wanted Ethan and Abigail to have these amazing memories and experiences with their little sister – away from the medical lifestyle we were all so used to living.

We spent a week at Give Kids the World and Disney World.   Our Make-A-Wish coordinator had everything we needed ready in our villa, right down the to special bath chair we needed for Hannah and supplemental oxygen we would need if Hannah had difficulty breathing.

There were so many things to do that week.  Because Hannah was only able to tolerate being at the park a few hours at a time, we were able to take advantage of all the fun activities of Give Kids the World.  We did spend quite a bit of time at the Wish Lounge in Magic Kingdom while Hannah napped, and the kids were able to spend time with the other siblings of wish kids who were visiting the park.

What was so special to us was to see how Ethan and Abigail were treated like royalty on the trip.  The trip wasn’t just about Hannah for us – it was about our three children spending this time together.  It was about Ethan and Abby creating fun memories with Hannah, something they will be able to keep with them after Hannah was no longer with us.

(Mickey/Hannah pic).  So back to this special picture of Hannah and Mickey.  Hannah’s condition had deteriorated by this time to the point where she had lost most of her fine motor skills.  She was no longer able to play with toys, use her iPad, or even lift her arms to reach out and hug us. 

But this day, when Mickey came to see Hannah, she got a smile on her face that we hadn’t seen in so long.  It was huge.  When Mickey came closer, she worked so hard to lift her arm to reach out and touch him.  It was so much work for her to do, but she wanted to reach out to Mickey Mouse so bad … and she did it!  I just broke down and started crying when I saw her do that.  Her dad was just in shock.  Ethan and Abby became so excited – “Look at Hannah!  Look at Hannah touching him!”

That was “theee” moment for us. This single picture taken by the Disney photographer at just the right time captured our feelings for the entire trip.  Hannah met Mickey – and she loved it.  And we loved being there to see it.  And we loved being able to see it together as a family.

Hannah passed away 7 months after our trip.  We thought we would have more time with her, but her body was just too tired to continue fighting.  When our hospice worker met with Ethan and Abigail to talk about Hannah, she asked them both to go to a separate table and draw their favorite memory of Hannah.

They both came back with pictures sharing memories during Hannah’s Make-A-Wish trip. 

Thank you for giving our family such a gift.  It may have technically been Hannah’s wish, but it was truly a wish for our entire family as we get to keep these amazing memories in our heart of our beautiful sweet girl who we miss terribly.

Stealing Halloween candy wrappers, 2010 ~ "This works for me!"

I have met some incredible people over the past month or two who have shared their experiences with building a nonprofit here in Las Vegas.  Organizations such as Make a Wish, Cure 4 the Kids, Nathan Adelson Pediatric Hospice, etc., have all opened their arms and have agreed to work with us as partners in mission.  To have this kind of support, so early after our formation, is overwhelmingly positive.

But it doesn’t just stop with those organizations, but other people who we have reached out to have enthusiastically offered their support of Little Miss Hannah by way of hosting events for us, helping reach out to others to help spread our mission, and some incredibly exciting celebrity connections.

It has been so cathartic for me, so uplifting to be able to talk about Hannah, talk about Ethan and Abby, and share why our mission is so important to me.  And to see it responded to SO positively – not just a “oh, okay, that’s nice” but with such genuine acceptance is…it just is amazing.

Yesterday, I found myself needing to visit Hannah at the cemetery.  I still go at least once or twice a week, but yesterday I just HAD to go be with her.  I find that when so much good is going on with LMHF, by talking about her and LMHF so often, that it takes away from my “Me and Hannah” memories and moments.

I still need my “Me and Hannah” moments.  Even though I can’t get them physically, just being able to go to the cemetery and sit there alone with her helps bring things into focus, being able to just let go and cry and tell her how much I miss her, tell her what people are doing to help us spread her story.

My focus on LMHF has to remain on MY Hannah.  With so much excitement and with the foundation coming together as quickly as it is, my heart needs to keep being able to have my “me and Hannah” time.

Also, Mitch, the wonderfully caring man instrumental in getting us this interview and helping us promote World Rare Disease Day in February, got NBC 3 to put the separate clip on their website. I like the heading – Little Miss Hannah Will Make You Smile.

Even he noticed that Hannah seemed more “lethargic and loopy” compared to her last visit with him a couple of months ago.   So the plan is we are going to reduce the Klonopin back to where we were at a couple of months ago which is 2 mL, 2mL, and 3 mL daily instead of 3 mL three times a day.   Hopefully in a few weeks, we will see Hannah get back some of her independent spirit and drive to crawl and play with her toys instead of just wanting to be held all day.

We are going to hold off on the sleep study at this point because I don’t feel her seizure activity is very active while she sleeps these days and because we really want to optimize her Klonopin to a stable level before we start playing around with other meds.   I feel comfortable with that decision, although once we move to the new house in a couple of weeks, we are going to start charting her O2 sats overnight to see if perhaps she needs to be on oxygen at night and let the pulmonologist know when we see him in a few weeks.   (It is difficult to do it now because the equipment is downstairs, and the oxygen concentrator is not portable enough to bring up and down the stairs safely).

She was definitely a bit more alert and happier today.   The Cipro has definitely started working to help with that and also her secretions which are already going back to being white and clear instead of yellow/greenish and thick.

We will meet up with her neuro again in a couple of months to see where to go from here.   In the meantime, I’m still going to work to try and get Hannah an appointment with Dr. Sanger, the pediatric movement disorder specialist from Children’s Hospital Los Angeles.   We also have appointments with her pulmonology and GI doc within the next month so we can also work on the O2 sats and reflux issues to help make her more comfortable.

Hannah also has her big evaluation with the school district in a few weeks so we can get her ready for transition from Early Intervention in a few months when she turns 3.   On a very sad note, we lost our EI service coordinator to a new job just recently – Hannah really bonded with her, and I hope that she can come visit with Hannah once we get settled as a “playdate” and not for “work.”

Lastly, Hannah’s stander came in today.   Metal blue (although I could have sworn I ordered a different color, but oh well).   After meeting with her orthotist today to do a followup on her leg braces, I think working with the stander over the next few months will also help strengthen her core as long as the decrease in Klonopin does as wel hope — give her more alertness, balance, and less of a drunk feeling!

We have so much unpacking to do, and I have almost 900 pictures to go through!   We took at least 700 on our own and then there were the 250 pics that the Disney Photopass photographers took and the few dozen that they took at Give Kids the World.

I can’t wait to share all the details, but for now, I just want to share this one picture for now.   THIS was the reason we wanted Hannah to go to Disney World for her wish.   The look on her face when she met Mickey and Minnie (3 times each!) was priceless!   Thank you Make-A-Wish for giving our family a lifetime of memories and giving Hannah the chance to reach out and touch Mickey and Minnie!

She stands...and is smiling!

We finally got the temporary stander today.   Ours is still “on order,” but after four months, they found one for us to borrow until ours comes in.

Hannah took to it immediately!   She stood over 15 minutes without any fuss or fight, which is a heck of a lot longer than she ever did on the trial stander in PT.  Obviously be in her home atmosphere is HUGE for her!   We tested her out at the different heights where she can either stand upright for maximum benefit or if she is tired, we can lower it a bit so she doesn’t have to work as hard.

I will admit it caught me off guard to see how tall she really is now!  I think at last check, she was just shy of 36 inches.  But seeing her standing there, comfortably for quite a bit, was just awesome.

Our home PT from early intervention is coming by on Thursday to put us into a schedule so we can build up time without stressing her out.  Between the stander and the braces, she has taken to all of this in stride!   The key, it seems, is to do everything at home LOL!

Sitting upright all on her own for almost 3 minutes!

We finally got Hannah’s leg braces in on Wednesday late afternoon.   So we took them to physical therapy yesterday so we can start working with them.

For the fourth session in a row (second at the clinic), Hannah had a FANTASTIC physical therapy session.   She worked incredibly hard, didn’t throw a tantrum (until she was exhausted, which was at the 45-minute mark).  She did great!   Especially since her PT put her new braces on her legs.  She didn’t even really fuss!

Her PT worked on getting Hannah to sit up on a bench without any back support.  All she did was hold down her feet, and Hannah was able to steady herself on the bench in the seated position for almost 3 minutes at a time.  This is amazing for her!   It is incredible what having complete leg support can do for her.   She hasn’t been able to balance on a seat by herself for any length of time for many months.

Look who is standing up!

Then, we worked on having Hannah stand up.  Yep, my girl was standing up!   She was completely supported by her PT, but Hannah did all of the work.  Before her braces, she would only be able to stand up for about 5 seconds because her ankles would roll almost immediately and dramatically.   Now that her ankles were completely supported as well as her legs, she stood up and played with the toy for a few minutes, multiple times!

I was so so so so proud of her.  She really worked hard, and this is so wonderful for her tone.   She has lost so much tone and balance since her hospitalization last summer that I didn’t expect her to be able to get to this point so quickly.   She really wants the mobility, you can see it in her determination!

I cannot wait until we get the stander (whenever the heck that may be) because using the braces with the stander is going to be the ultimate best thing in the world for her body!

The festival was produced by the husband of an amazing mom I have met here in Vegas.  Their daughter, Jobyna, is about 6 months older than Hannah, and she has her own myriad of symptoms that they are working to try and understand.  She is also an absolute cutie!

I feel a total “You get it” connection with this mom.  It is so nice to be able to open up over a lunch date about what we are going through with Hannah, share resources here in town, and just dote on our daughters in a way that very few people can do.

Back to the festival…

We were invited to go back stage to hang out with the family as well as get to meet some of the celebrity VIPs that were participating in the event.

Hannah was not her usual social self, as she was just beyond exhausted since she had not taken her nap yet that day (and it was already almost 5 pm!).   We took a bunch of pictures, and every single one shows Hannah just not a happy camper.   She actually ended up falling asleep on Daddy’s shoulder soon after the event started.

Ethan was absolutely in awe of meeting Las Vegas Mayor Goodman, and he couldn’t believe that he was having a one-on-one conversation with him backstage.  The mayor enjoyed Ethan so much that he gave Ethan his VIP access pass to the event!   Ethan was so incredibly proud showing off this pass because he knew it was one of a kind.

Abby enjoyed watching the dancers and showgirls get ready to perform.  I think she was in love with the dancers outfits because they “looked so cool.”   It was really neat because one of the dancers turned out to be the mom of one of Abby’s school friends!

I think the most humorous part of the evening was when I had to force Ethan to take a picture with the dancers and showgirls backstage.   I mean, come on, what 10-year-old boy would not want to be surrounded by 7 or 8 beautiful woman!   I know someday he will thank me for this picture.

Then it was time for the show!

Since Hannah had already passed out, Daddy took her to the other end of the street.   Ethan, Abby, and I were front and center while Jobyna’s dad (and the show’s producer) brought out about 15 KITT cars and quite a few celebrities associated with both the 1980s show and the 2010 show!   Abby cracked me up because she was able to touch one of the cars, and she proclaims, “I’ll never wash this hand again!”

I loved that the kids were made to feel so special, being backstage and all, even though Ethan felt that because he had the mayor’s VIP all-access pass that he should be allowed to get into the KITT cars and also to go on stage!

The kids with Vegas Mayor Oscar Goodman and his showgirls!

Does life get any better than this for a 10-year-old boy?

Ethan and Abby front and center among a sea of KITT cars (and Ethan showing off Mayor Goodman's VIP pass!)