My daughter's "sister" passed away yesterday

[BartmanPDX]

As many TB regulars know, I have a daughter with autism and epilepsy. In an earlier thread, I detailed the story of her service dog, Shenandoah, which is located here, if you’re curious.

While we were at the service dog school in March 2009, we met other families with kids with similar disabilities to my daughter, and we were all getting trained with our service dogs together. It was really nice to get to spend time with other families who understood what we were going through, and we’ve stayed connected to many of them in the months that followed.

We became especially close to one family while we were there. Their daughter, Hannah, was so similar to our daughter that we bonded right away. Hannah had the same medical issues that my daughter Kira has – autism, refractory (difficult to control) epilepsy, and occasional “status epilepticus” seizures – seizures that last more than 30 minutes and are potentially life-threatening. A “status” seizure is terrifying – it’s a state of constant seizure and the oxygen in the blood can become dangerously low. Kira has had a few such seizures but has always pulled through.

Kira and Hannah were remarkably similar in other ways, too. They both freely gave hugs to everyone including total strangers, they both loved playing with stickers, and both had a goofy sense of humor. They were so like each other that we joked that they were like “sisters with different mothers.” After we left the dog school, my wife kept in touch with Hannah’s parents daily, and we supported each other through hospital visits (both Kira and Hannah were hospitalized several times last year) and through the good times as well. Hannah’s dog Koolio (she called him “Koo-yo” was trained as a seizure dog and went to school with her, much like Shenandoah went to school sometimes with Kira.

Recently, Hannah had been doing very well. Her seizures had gotten under better control and she was in school regularly. She had a great Christmas and like Kira, she finally seemed to really understand the whole idea of Christmas presents. She was making progress, and was really happy.

This past weekend though, Hannah had a really bad status seizure – it lasted over two hours. She was life-flighted to the Pediatric ICU, but they were unable to help her. She lingered for a few days – long enough for the family and her dog to get to say goodbye.

Yesterday, Hannah died, surrounded by her family, and with Koolio licking her feet.

I’m posting this story for two reasons: 1) I needed to vent, and TB is where I do that. Sorry if I come off as a real downer. As a stay-at-home dad, it's on my mind a lot.
And 2) to tell those of you who have kids to appreciate them and love them while you can. I know being a parent is difficult and there are moments we all have when your kids are driving you absolutely ******* crazy. Believe me, I know. But the one thing worse than having a child who is driving you nuts is NOT having a child driving you nuts any more.

This has hit us really close to home. Kira has had some bad seizures but has always pulled through. We know it’s always a danger, which is why either my wife or I always sleeps with her -- we haven’t slept alone together in the same bed in years. The first thing I do when I wake up is make sure she’s still alive. Kira’s been screaming and driving me nuts all day today, but I can’t stop hugging her. At least she’s still with us.

Rest in Peace, Hannah.

[bassteban]

Wow- just wow. It may not last, but for the moment I appreciate my 3 a bit more. Beyond that, I'm speechless. Thank you for sharing- sincerely.

[J. Crawford]

Thats terrible to hear man.. I honestly dont have words to describe it.

[Tommygunn]

Your avatar, Jordan, sometimes doesn't fit threads well...


Anyways, that is very sad

[capnsandwich]

Praying for the family and yours as well. I type this as I hear my 2 year old son and 8 month old daughter upstairs talking to their mommy. I'm going to go hug them right now.

[west*coast*bass]

Thanks for sharing. I am a firm believer that we read things we need to read at the time when it's needed most. This is one of those times for me. You have put some things into perspective for me, not about loving or appreciating my kids, that has never waivered...but about making it through the situations that come up in life that you can't go around.

My prayers go out to Hannah's family. They were blessed to have had their time with such a special child. Stay strong and enjoy your daughter.

[BartmanPDX]

Originally Posted by bassteban

Wow- just wow. It may not last, but for the moment I appreciate my 3 a bit more. Beyond that, I'm speechless. Thank you for sharing- sincerely.

Thanks. That's why I posted. It's a sad story, but we all need a little reminder now and then about what's really important in life. It's too easy to take things for granted when life is going well.

She was a really sweet girl. I'm glad I got the chance to know her, albeit briefly.

[GregC]

Bart, thanks for sharing. My condolences to Hannah's family. What you do for your daughter is amazing, try to keep your head up and enjoy every minute.

[MJ5150]

Originally Posted by BartmanPDX

.......they were like “sisters with different mothers.”

"You may be fast, but I can knock you down".

Hang in there my SEC brother.

-Mike

[Ericman197]

That's terrible. It's especially sad to hear when this sorts of thing happens to a young child. It's never their fault, and they'll never understand why they have epilepsy, leukemia, diabetes, sickle cell, etc.

Something you may want to talk to Kira's doctor about is the MCT diet. It's fairly effective for epilepsy that can't be controlled by medications. It is not intended as a substitute for medical care, but in those children for whom there is no other option, the majority will see a significant reduction in seizures:

"After three months, 83% of them were still on the diet, 26% had experienced a good reduction in seizures, 31% had had an excellent reduction and 3% were seizure-free"

http://en.wikipedia.org/wiki/Ketogenic_diet

I would bring up the idea of combining whatever treatment she is currently receiving with the MCT diet. If she is being treated by a pediatric neurologist for the seizures, then he will be aware of the diet, and has most likely used it before. Just like anything other treatment for seizures, the MCT diet has risks/benefits, so it's something you'd need to discuss with her neurologist, pediatrician, and a dietitian.

One of my friends did the MCT died for a few years as a kid when his medications weren't completely controlling his seizures, and it worked wonders for him. Some forms of epilepsy will benefit a little, others a lot, and others not at all.

[bongomania]

Bart, thanks for sharing that story, and I hope your daughter handles it OK.

Edit: that last part sounds weak... I just don't know what to say. My heart goes out to all of you.

[BartmanPDX]

Thanks, Ericman197. We've looked into the Ketogenic diet on several occasions.

Right now, we're in the process of getting referred to a national epilepsy center. We're currently seeing the best pediatric neurologist in Oregon, but he says my daughter is a more difficult case than he can handle. He also didn't think the ketogenic diet would work in her case, though it has greatly helped other kids he's treated.

[CBgaragebassist]

Very sad to hear this. Best wishes for you and your daughter. Condolences to Hannah's family. The death of a young child is hard to take for anyone, even worse for the parents. Prayers sent your way.

[warwick.hoy]

I'm fighting back tears man. Even though I don't have kids. I've followed your family and Shenandoah's story. I can imagine how scary that can be for you. Sending good vibes your way. Keep your stick on the ice.

[BartmanPDX]

Originally Posted by warwick.hoy

I'm fighting back tears man. Even though I don't have kids. I've followed your family and Shenandoah's story. I can imagine how scary that can be for you. Sending good vibes your way. Keep your stick on the ice.

Thanks. I hope we get the chance to meet at a GTG or something some day, and talk about happier things (like my new Will Lee!).

FWIW, Shenandoah was a total pro today on the MAX light rail train, which is Kira's favorite thing in the world right now. She's a fantastic dog, and will be going back to school again with Kira on Wednesday.

[TBrett]

Originally Posted by BartmanPDX

Sorry if I come off as a real downer.

No, my friend. You do not come off as a downer. No need to apologise. The circumstances are a huge downer, for sure, but thank you so much for sharing with us. I have followed your earlier thread about Kira and Shenandoah. How wonderful that you all found such a great connection with Hannah and her family. I can't begin to imagine the impact of her passing. My heart goes out to all of you.

[MakiSupaStar]

Ah Bartman, I'm sorry to hear that. Give your daughter a great big dad hug for me. I walking over to hug my boy now.

[Marco A. Mayer]

It's way damn sad. My uncle is 50, he's got a 15 year old kid with autism too. His wife left him when they found out my cousin was an autist. Today, he's suffering with bills and rent, and is too stubborn to accept any kind of help from family. But, he loves his son. He really loves him. He's the reason he wakes up everyday and goes to work.

[SteveC]

Originally Posted by BartmanPDX

2) to tell those of you who have kids to appreciate them and love them while you can. I know being a parent is difficult and there are moments we all have when your kids are driving you absolutely ******* crazy. Believe me, I know. But the one thing worse than having a child who is driving you nuts is NOT having a child driving you nuts any more.

Being a parent is difficult. We are not going through anything as serious as you - and I pray for you - but my daughter is going through a stage. I don't care how hard it gets, I can't even imagine what I would do if she wasn't with me. I hold her tight (she still loves to snuggle thank God) every day and thank God for the gift he has given me.

This post is not a downer - it's a reminder.

[Mark Wilson]

Oh wow...
I'm so sorry to hear.
As a lifeguard, we're supposed to call emergency if it lasts over 5 minutes. I can't imagine TWO HOURS.