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Henry's Little Heroes

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Tiring day for us Alderson folk. We went to London to visit Henry's specialist and we have a plan! Scan in Birmingham no longer needed (we're really relieved but also a smidge disappointed as I'd earmarked a chocolate binge at Cadbury World on the way up 😂). Instead, Henry will have liver and bone marrow biopsies under anaesthetic and then another anaesthetic at a different time, to have either a port or a Hickman line fitted so he can have his iron pump running 24/7. This might be for 6 months, 12 months...there's no way of knowing. We knew it was coming, it still feels rubbish but at least we know we'll be getting him ready for transplant as quickly as we can. We can plan towards transplant because we were told today that a 12/12 matched donor has been found for him (you can't get better than that unless it's from a sibling donor)! We are so relieved and feel so lucky to be in this position. Many are not, so please join the stem cell register with DKMS UK and give others the hope that we now have. The decision to go forward with the transplant has not been taken lightly, we were briefed of the risks again today and were told there's a 1 in 10 chance Henry won't survive the transplant. We wish there was a better, less dangerous and less brutal option, but there just isn't yet. DBA UK support and fund research into better treatments and we will be doing our bit to raise as much awareness and funds as we can on their behalf. Wish us luck for everything that's to come and stay tuned 😉

Today...I am 3! Happy Birthday to the best boy, couldn't be any prouder. He's had a lovely day full of cake, cards and presents (I may regret the drum kit purchase soon enough, good thing our neighbours love him 😬)! Hard to believe this time three years ago he was fighting for his life and we had no idea what the future would hold for him. We owe a lot of people a 'thank you' on Henry's behalf; to all of the @NHS staff past and present, who take such marvellous care of him, to @DBAUK and all the other DBA families we're lucky enough to call our friends, to @rallysportautomotive and @bradleysfight for all of their hard work and support, to all of the lovely charities who have gifted Henry and made his life as super as possible (The @SandcastleTrust and @WipeAwayThoseTears to name but a few) and lastly, to all of you for sharing our good days and bad days for the past 3 years. We love you all, thank you x

Blood test day! We've managed to stretch transfusions out to every three and a half weeks which is brilliant as it means less hopsital visits and hopefully less iron issues. Bad news is, it means we have to drag the lovely community nurses out at the weekend so they can get blood ready for us for next week. They are absolutely brilliant and we're really lucky to have them. Good thing Henry is well trained and usually has a cup of tea ready and waiting for them 😁!

morning, beach again! 😃 . . . helpourhenry.org . . #henryslittleheroes #goodmorning #morning #morn #awake #walking #wake #ready #tired #instagood #earlybird #photooftheday #goingout #instamorning #beach #early #fresh #skyporn #DiamondBlackfanAnaemia #donate #goodcause #toddler #kid #instakid

Good morning! Beach time ❤ . . helpourhenry.org . . #henryslittleheroes #goodmorning #morning #morn #awake #wakeup #wake #ready #beach #instagood #earlybird #photooftheday #goingout #instamorning #instadog #early #fresh #refreshed #DiamondBlackfanAnaemia #donate #goodcause #toddler #kid #instakid #GrandBassetGriffon #GBGV

I love ice cream 🍦 . . helpourhenry.org . . #henryslittleheroes #icecream #kid #instakids #DiamondBlackfanAnaemia #child #icecreamvan #icecreamtruck #childrenphoto #love #cute #adorable #instagood #young #sweet #handsome #little #photooftheday #fun #family #baby #instababy #icecreamcone #happy #smile #instacute

"Mummy, Daddy, Henry...in there!" We're in issue 40 of @pick_me_up_magazine spreading the word for @dkms_uk and @dba_uk this week 🤗 x . . helpourhenry.org . . #henryslittleheroes #OurStory #kid #instakids #DiamondBlackfanAnaemia #child #family #childrenphoto #love #cute #adorable #instagood #young #sweet #donate #handsome #little #photooftheday #fun #magazine #blonde #instababy #play #happy #smile #instacute

#Repost @dkms_uk • • • • • Check out our little friends who have gotten behind @marrowformarley's search to find a blood #stemcell donor! 💕 🐶 🐢 . Could you be a match for Marley or someone else in need? ❤ Head to the link in our bio to register as a potential blood stem cell donor today! ✨ . #dog #puppy #pup #cute #instagood #dogs_of_instagram #pet #pets #animal #animals #petstagram #dogsitting #photooftheday #dogsofinstagram #ilovemydog #instagramdogs #dogstagram #dogoftheday #lovedogs #lovepuppies #hound #adorable #doglover #instapuppy #instadog

Giving some before we take some tomorrow 💪😁! #GiveBlood #SaveALife #DBA . . helpourhenry.org . . #henryslittleheroes #mummy #daddy #kid #instakids #DiamondBlackfanAnaemia #child #children #childrenphoto #love #cute #adorable #instagood #young #sweet #donate #handsome #little #photooftheday #fun #family #baby #instababy #play #happy #smile #instacute

Captain America in da house! Thanks for sharing our frustration on Friday. Henry's absolutely fine and woke up singing on Saturday so all is well! We've got a busy, blood-themed week, nurse tomorrow to take blood, donating blood on Wednesday, (us, not Henry!) then blood transfusion on Thursday. Hospital called us last week and said that he needs to be fitted with a heart monitor for 24 hours too as they're a bit worried about his heart rate which is always high...hopefully nothing to worry about 😊 x . . helpourhenry.org . . #henryslittleheroes #CaptainAmerica #Marvel #Avengers #MarvelAvengers #kid #instakids #DiamondBlackfanAnaemia #child #NHS #childrenphoto #love #cute #adorable #instagood #young #sweet #donate #handsome #little #photooftheday #fun #family #baby #instababy #play #happy #smile #instacute

So after the horror of yesterday, half way on our 3 hour drive home, a partially sedated Henry & a petite mummy who should know better, decided to have some fun at the South Mimms service station after a poo'y nappy change 😷😝😂❤ . . . helpourhenry.org . . #henryslittleheroes #mummy #kid #instakids #DiamondBlackfanAnaemia #child #bugattiveyron #childrenphoto #love #cute #adorable #instagood #young #sweet #donate #handsome #little #photooftheday #fun #family #baby #instababy #play #happy #smile #instacute

So today we went in for a special MRI scan called a Feriscan in London (3hrs each way by car). It measures the quality of iron in the liver, Henry has severe iron overload due to the life saving blood donations he needs. . But unfortunately he didn't have his scan! . In a nutshell, we've had a very traumatic afternoon. Henry couldn't take his sedative, it took both of us, a nurse and a doctor to hold him down and pinch his nose to make him swallow it and then he vomited it all up. It was really hideous for all of us and we feel horrible for putting him through it for nothing (he had a nap but woke up as soon as the scan started so we had to pull him out). So, we have to take him to Birmingham hospital to have the scan done under general anaesthetic as soon as poss. . Henry's ok, he's a little upset with us still but quite rightly so 😔. We're still stuck at the hospital until he has a wee and then we'll have a long drive home in London rush hour traffic so we're really not chuffed at all! . #sad #hospital #mri #toddler #instacute #donation #diamondblackfananaemia #cute #instababy #smile #daddy #baby

Mummy & boy x . . helpourhenry.org . . #henryslittleheroes #goodnight #night #nighttime #diamondblackfananaemia #mommy #mummy #mom #mum #goodday #instagood #instagoodnight #photooftheday #nightynight #cute #toddler #baby #passout #knockout #knockedout #donate #charity

#Repost @worldmarrowdonorday • • • • • #Repost @rossfh with @get_repost ・・・ Only 30% of people who need a blood stem cell donor can find a family member who is a match. You can give someone a second chance by registering to become a donor! Check out @giftoflifemarrowregistry or @bethematch to learn how. #wmdd2018 #stemcelldonor #endcancer

This is incredible, you lot are so generous! Aaron's monumental efforts to ride nearly 250 miles in a single day last Saturday, has raised £570 (including offline donations) - we're keeping this page open for a while so please visit & share the link to try and up the total a little higher! ❤💪 . https://www.justgiving.com/fundraising/for-dbauk-and-henry-alderson . #cycling #touring #charity #sponsoredride #diamondblackfanaemia #donation #fundraising #epic

#Repost @miasmarrow • • • • • Hi, my name is Mia, I have a rare bone marrow failure syndrome called Diamond Blackfan Anemia...I produce no red blood cells, therefore I’m only alive because people donate blood and share their life with me. I need a cure via @bethematch - a simple cheek swab to see if YOU ‘match’ me so I can have a bone marrow transplant and be cured. Today is, World Marrow Donor Day! (My closest match so far was a 29 year old from Europe...but it wasn't a 'perfect' match.) Thank you to all the people in the world who have already registered to be a bone marrow donor via @bethematch (a simple cheek swab) to potentially save a life! I know my match is out there somewhere...never giving up hope that one day I will be cured 🙏🏼 *For more info about how you can BE THE MATCH visit the link in profile! #WMDD2018 @worldmarrowdonorday #donatemarrow #bonemarrow #needmarrow #cureDBA #diamondblackfananemia #worldmarrowdonorday #hope #match4Mia #bethematch #invisibleillness #bethematch #thankyou #nevergiveup #prayers #GodBless

Good morning!! How are you all? ❤ . . helpourhenry.org . . #henryslittleheroes #goodmorning #morning #morn #awake #wakeup #wake #ready #ontheprom #instagood #earlybird #photooftheday #goingout #instamorning #seaside #early #fresh #refreshed #DiamondBlackfanAnaemia #donate #goodcause #toddler #kid #instakid

100 miles done! Please send @aaronskibeat001 some words of encouragement on his epic 250mile charity bike ride for Henry! Use the comments below please and we will message him 💪❤ (donate via link in bio) . #donate #sponsorme #charity #bike #cycling #diamondblackfananaemia

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