Oliver Danger's hope fund

$5,810 of $25,000 goal

Raised by 50 people in 32 months
Oliver Danger is one year and four months old.  when he was almost exactly one year old he was given a terminal diagnosis; Sanfilippo Syndrome. It's a type of storage disorder. We were told he would live to age 12-14.

His brain would stop developing between age 2-3. At 4-5 his brain would start backsliding into infancy.  By age 10 he wouldn't be able to walk or talk. And he would die between ages 12-14, most likely either from starvation or suffocation. We were told this is NOT just a possibility, but that my brother was GOING to die.

Then one of the doctors at Seattle Children's Hospital, (who had lost a child himself) told us about Duke University in North Carolina and the amazing things they were doing there with stem cells. We got in contact with them and within two weeks we went from no hope to realizing oliver might have a chance yet. My mother and father would have to relocate across the country for (6-9) months. oliver would have to go through many things, including chemotherapy and not leaving the hospital for AT LEAST two months; being confined to a sanitary room.

The chances of him surviving this are high, in the 90% and were very hopeful but also very scared. For our family this wasn't a choice. It was either watching him die slowly for many years or giving him what seemed like the one chance he had. But close to none of this is covered by insurance. So most testing and treatment will have to come from out of pocket. Not to mention travel, and where my family will be staying for months. And i will be staying at our home in Washington State, miles away from my family.

Needless to say, before any of the money strain this is going to be hard on our family. However to us, it matters more that everyone is just more informed about storage disorders. Anything you can give obviously helps, but if you could just share this around itd mean a lot.
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Who's Cells Are These?

Oliver had a weakness in his line - almost from the beginning b/c he is SOOOOO Busy. Several nights ago  he was very needed (as one would be if they were uncomfortable) I took him out of his Crib to snuggle him. An hour later I went to put him back - then I went to the restroom - which was the only light on besides the TV. It was at this point I noticed I was went but moreover - there were drops of mystery blood - so we went looking for where they would have come from... his line had a hole in it. :C  The night staff did an emergency repair that took 3 people (besides Wog and myself) and 45 minutes. They warned that they could use it for 4-6 hours and it would take 2 days to cure... GREAT : /
the next morning (roughly 9 hours later) he broke his line once more -this time I was sticky and covered in a small puddle of his blood.

They broke the news to me that he was going to have to do the surgery to replace the whole line - you know the one that is in his heart and his corroded artery. I was not excited. Better still: they were not likely to do it on the same day (this was Monday night). 

So Tuesday Oliver went for line replacement, luckily it went very quickly and my the afternoon you never would have known he had had surgery and not slept the night before (or the night before that).

Also on Monday (before the line broke the first time) they had drawn blood for the test that would tell us for sure WHO's cells Oliver is growing. TODAY we got those results back. I should preface the next statement by saying as recipients the most cells they will ever have of the donors is 98%. OLIVER HAS 98% DONOR CELLS! Normal White Count is 3.8- 14 OLIVER HAS 5.4 - HE IS IN NORMAL RANGE!!! As added good news - Oliver is behaving much like he did BEFORE any of this started... I am feeling very blessed.

*** We still have a long way to go: we are 11 days (AGAIN) from DOUC (the clinical trial) we really need those cells to grow. Oliver still will have no immunities for the next year. We are likely about 2 weeks from leaving the hospital. And between now and then I have to learn to change his lines and draw his labs and change his dressings and clean his g-tube and administer meds and they have to wean him off all of his meds...

*** Please pray for the DUOC cells to grow, it's so important - so that Oliver will be the first DUOC for Sanfilippo & we can further the research and help find a cure.

I will have to add photo's later they don't want to send from the hospital WIFI :C
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Today is our first hard won victory. Oliver is ENGRAFTED!!!

We still need the cells to GrowcellsGrow... b/c the cells in his body need to be well enough for us to travel home (which is still a long ways off as far as they tell us)... AND the DUOC. (Day 57 in the hospital, over 60 days away from home, day 22 after transplant). They will run a test Monday to that takes a week to get back to make sure that these cells are the new cells and not his original cells - but odds are in our favor- this test takes a week to get back.

The DUOC cells were not successful at growing in the lab for him (in the cord blood he was given). So they have to grow the cells in a second cord blood. Right now, what we know that means is instead of getting the DUOC on day 28 (5 days) we are supposed to get them on day 42 (19 days out). #GROWCELLSGROW


Oliver and Bobby are asleep, it is 2:37 in the AM - and I am crying tears of joy... Good job growing those cells sleepy boy!

***This week was exceptionally challenging... I don't think I realized it until just now: he has been sick more frequently, more tired, more sicks, near to no eating... very sad & tired wog as he grows his cells. Some days he is sleeping 18 hours over the course of the day. The cell growth was hard to wait for, but here we are.  I am not going to go day by day this time... b/c I just want to celebrate our success in this moment.
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ENGRAFTING or NOT ENGRAFTING: that IS the question... (you don't get a rash or a fever when you are growing your own cells)

Sorry for the obvious posting delay... we have been a bit busy with pain and rashes and different rashes... and hair falling out and blood count... and in our today is day +16 we are 12 days 'til lumbar puncture for DOUC cells (clinical trial where they push the transplant cells into his brain- OLIVER is patient 1 for Sanfilippo, hopefully paving the way for other treatment options for Sanfiloppo!!!) So what we are doing now: waiting for the cells to grow... for many days his cells will be @ .1 which is basically no cells. then it will pop up to .2 and go up and down til it is @ .5 or better for 3 days in a row - then they will send the cells for cell 'finger printing' to see if they are his cells (which would mean he has rejected) or the donor cells (which would mean he has engrafted) GROW CELLS GROW

He did have 3-4 days where he did not want food and did not ask for food... but he is back to asking all day - he just doesn't want anything we have to offer. Or he thinks he wants it... and then chews it for a while and gives it back by pushing it out of his mouth with his tongue.

Last Wednesday (day +7) it was my night to go to the RMH... I was rubbing his fuzzy head and hugging him good bye and I realized my hand was full of little blonde hairs... so was my shirt so was his shirt... in 3-4 days he was completely bald... he was born with a full head of hair... I mean THICK hair... it was sad and strange to see him bald, but it's only hair- he is still a sweet baby with sparkly eyes and a brilliant smile. (wbc (white blood count) .1)

Last Thursday (day +8) he got his first fever, and he looked like he had demon scratches on him... anywhere where skin had pressure, the tiny blood vessels under his skin would burst. So, his chubby wrists and the inside of his elbow - behind his knees and where the blood pressure cuff hugged his arm he had little purple lines... apparently his platelets were low... daily platelets now (but some kids burn through them and need 3 infusions a day) he also gets a blood transfusion ever 3-4 days now when his red count is below 8. We started his pain drip and his pain button on this day. (wbc (white blood count) .1)

Last Friday (day +9) a red rash formed on his head, just a little at first... but he had a higher fever. throwing up little bits.(wbc (white blood count) .2)

Last Saturday (+10) the rash was worse still, it wasn't really on his head (except his face) and had moved to his belly and a bit on his back. We upped his meds again on this day... we had to start pushing the pain button before every diaper b/c the acid leaving his bum was leaving ulcers on his bum, his nads and in other diaper related area's... literally putting on 2 sprays and 3 creams on a diaper change. plus add one for his body and face.
The rash was identified as GVHD rash... but they can't confirm that until they run the test for engrafting. (wbc (white blood count) .1)

Sunday (+11) this rash is now everywhere (his face but NOT his head), butt area ulcers continue... SHREIKING @ diaper changes is almost unbearable button pushes or die... he wriggles like he is fighting for his life when we are wiping him with gauze and water... :C
throwing up little bits, but he slept like 14 hours this night. but in the middle if it he would gesture for help and say help when I asked him what he needed he pointed at mom... when I went over there he just wanted a really big hug... then he would sit for 10 minutes and repeat... he did that every 15 minutes for 2 hours. Just goes to show - they can literally give you ALL the meds in the world but nothing is better than a hug from Mom. such a sweetie. (wbc (white blood count) .1)

Monday (+12) this was the worse rash day... he his cheeks are red, and everything else is raised and angry but you can't even tell one spot from another now... like scales or tiered brail. Today was a very bad day... they added a secondary steroid goo - this one cannot go on his face... it is sticky the whole time until his body absorbs it... STICKY like when you first put Vaseline on X2 and it doesn't wash off... not really. So, if you don't use gloves when you do it the first time (which no one will remember to tell you) jokes on you b/c your hands are tacky for roughly 2 hours... JOKES ON YOU, no literally... it's like having one of those gummy hands... except not as fun b/c you have 2 and SURPRISE they are your real hands... just glad I didn't have to use the restroom during that time... but I digress... do this 3 times a day...*USE GLOVES*, you will still get it EVERYWHERE @ least not on your hands (how do you know it's time to do it again? his skin stops being sticky).
Now that I am thinking about it - I have spent a strange amount of time thinking about things sticking to Oliver and his tacky body this week... on this day when we went out in the hallway for our walk Oliver didn't feel good - he didn't really want to, he did some crying... he sat in the hall in protest. We got him one of the cars to ride in... and there were spatulas in the trunk of the car... he fell asleep in the car with the spatulas... for the rest of the night - you could not wrangle the spatulas away from him... he fell asleep with them and then as his arms came to a resting position the spatulas were on his forehead. I tried to take them - he was not awake he screamed (eyes closed) til they were back in his hands... it was crazy. (wbc (white blood count) .1)

Tuesday (+13) on this day there was rash improvement on both sides! progress... he was very tired and was only in a good mood for 1.5 hours in the whole day. He went to sleep really early and then woke in the middle of the night for a while and watched cartoons, then I asked if he could try to lay day and rest - he did and he was immediately back out.(wbc (white blood count) .1)

Wednesday (+14) Oliver had a good morning rounds went good, after I left (I needed to go to the dentist) apparently it was a rough afternoon - with people in here about every 10-15 on the long end until late into the evening. Oliver did not go to sleep til 2 am, so neither did Dad pants. (white blood count) .2)

Thursday (+15) Today Wog was desperate for food I tried to give him everything we had and he didn't want any of things. There was an Easter egg hunt on the ward - which he slept through but we had his own in the room. We ate dinner in the room and he was sooooooo sad about us not being able to share - he got a bit sick his fever is going up again (white blood count) .2)

Today is Friday (+16) It is just about 4am here, & I do not know what today will bring - but, so far we have a fever, and a rash that is better than yesterday.

                         ~GROW CELLS GROW~

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Transplant Day and BEEEEYOND...

Transplant Day: Transplant was the biggest non-event ever... I expected some big todo TA DA... none of that. It was a lot of build up and then Oliver slept - the Transplant Cord Blood was delivered in a syringe and they ran it for 40 minutes - starting @ 13:37pm on the 3/29... Happy Transplant Day Baby Head. Mouth care was harder for him starting on this day. He has been on CePHapeme (sp) for a couple of days and it is known for making body hair ... well, more... his eyebrows and body fir are CrAZy (this will all immediate revert back once the med stops around 6 months out)... he has these MASSIVE and CRAZY old man eyebrows.

T +1 = this day was really frustrating to Oliver and for Bobby (I call him OATs), not for any reason except that Oliver was SUPER full of energy and he never got off his med-pole to walk all day (we learned during Chemo week that taking him out alone with out help and with the med-pole is a pretty big challenge) so Oliver was grumpy and I think that wore on Dad a bit... Oliver was so desperate to get out he would leap out onto anyone that opened the gate... he is too heavy to do that :C.  Eating Normally. Mouth care trouble again.

T+2 = Oliver has gotten more used to being a "caged animal" nothing else to really report. on this day - they say that everything is going as they expect current. - Eating normally. Mouth care trouble again.

T+3 = He had a pretty good day today... until 6pm... he had a Diaper that was a #2 but it burned his booty very badly. Ulcers on his bum :C Booty regiment has a wash spray, a barrier spray 4 creams... nothing helps... today they gave him pain meds - by the end of the night I got him on his med-drip and med-button. OFFICIALLY has mucositis :C, Mouth care still a trouble. the Hosp staff advised us that they know it is really tough for him to be on his pole all day but they are making an effort to get him off the pole every day for at least 1 hour - that gives us a chance to ware him out in the hallway and get in a super short shower (and they change his med-pole and his bedding). It is a VERY busy hour. 

T+4 = Most diapers are #2 diapers and we he is on meds that make him constantly pee (and has been on it for a couple of days) we basically have to change him at least once an hour... the stuff leaving in the #2 is a yellow brown and is really snot like (Customary for Mucositis). We have to call the nurse and push the button for him every time we need to change a diaper - now when you get out the diaper stuff he just starts crying anticipating the pain... it is soooo sad.  Mouth care still a trouble. Eating a bit less than normal.

T+ 5= On this day he threw up in the evening and again in the middle of the night... he seems to be gagging more on the junk peeling off his throat. But he still is playing a lot and making an effort to flirt and smile at the nurses. Eating a bit less than normal. Oliver went to sleep really early and slept 13 hours. In the middle of the night he woke up for an hour and he and I sang songs for a bit - then when I turned the lights down he laid back down... and back to sleep.

T + 6= Today we offered him food and he didn't want barely anything... He was really pretty fussy today... it was a rough day. He was over people, didn't want to be touched in the hallway when he and OATs were walking someone came to help him with one of his cords so that he didn't trip and he had a TOTAL MELT DOWN... they had to go back to the room where there were no people so that he could get calmed back down. He was totally over people on this day (this is day 40 in the hospital... I TOTALLY agree with you today Oliver). Still having diaper drama and issues with mouth care. He had another transfusion on this day and platelets.

T + 7= Oliver had a pretty good day today, he slept in late (b/c after midnight he awoke and I actually fell asleep before he did so I am not sure when he went to bed) and he took a nap. He gestures for food but turns down everything we offer him... but for what every reason he DID want my Greek food. Today is the day when all his hair started to fall out. I was snuggling him and rubbing his fuzzy head and his hair... fell out in my hands... after rubbing his head for a couple of minutes I had to change his shirt b/c he was COVERED in his little baby hair :C soooooo sad. I am guessing he will be totally bald in the next couple of days. He also has developed a weird new rash which might be due having low platelets over the last couple of days.

*** Sorry for the lack of pics this week - spending a lot of time consoling and a lot less time taking pics this week - I will add some later if I get the chance.

What they tell us to expect is that the mucositis will be a lot worse over the next couple of weeks then we will get 3 days in a row where the white cell count is over 500 then they will test the 'DNA finger print' to determine whether these cells are the transplanted cells... or if they are his original cells. If they are the new cells then we are engrafted, if they are the original cells then he has rejected and we will have to "rinse and repeat".
we are currently 21 days from the Lumbar Puncture to provide him with the cells directly into his brain... this is the Clinical Trail that we are doing: called the DUOC study. As far as we are told everything is going according to the master plan.

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$5,810 of $25,000 goal

Raised by 50 people in 32 months
Created November 8, 2016
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Barry Coleman
26 months ago
Dulguun Dashlkhagva
27 months ago

For handsome Oliver.

Clarence Yuen
27 months ago
Greg Deviny
27 months ago
Jack Hannen
27 months ago

God's blessings for your son, you and your family. We all care for you.

Adam Vallely
27 months ago

Thinking of you & the family.

Jamie Terry
28 months ago

Thinking of you all !!

Barry Coleman
28 months ago

Best wishes.

28 months ago
Wendy Salomon
28 months ago
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