In Washington DC and Gaza two very completely different households are united by one very uncommon illness

It is a paradox that humanity at its very worst so typically additionally brings out its perfect too.

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This is a narrative concerning the kindness of strangers. It's a narrative about hope over hopelessness. It's concerning the struggle in Gaza but additionally concerning the rarest of ailments.

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It is about two households in worlds far aside. It is a narrative about two little ladies, Julia and Annabel.

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I do not but know the way it will finish. But that is the way it began.

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It was two weeks in the past when my telephone pinged: a message on Instagram from a friend-of-a-friend. Her identify is Nina Frost.

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Nina and I first met just a few years in the past at a celebration in Washington DC the place she had advised me about her daughter Annabel, slightly lady with an ultra-rare genetic dysfunction known as AHC.

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I bear in mind Nina explaining the way it was a illness like no different.

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'The human time bomb illness' she had known as it, primarily based on the all-consuming parental nightmare that their little lady may have a deadly seizure at any second.

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I've adopted Nina's Instagram, @HopeForAnnabel since we first met.

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The excellent news is that Annabel is doing nicely, albeit with that everlasting hazard hanging over her. She requires fixed care, consideration and love.

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Nina's message to me wasn't about her personal daughter. It was about one other little lady, in Gaza.

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Rare ailments like AHC, which stands for Alternating Hemiplegia of Childhood, generate tight networks; the households residing with the situation. Only about 1,000 individuals worldwide have been recognized with AHC. It actually is uncommon.

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"There is a little girl stuck in Gaza with the disease," Nina wrote to me.

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"Julia is three - after the last few months she has become paralyzed and unable to eat as her symptoms have worsened dramatically. We are desperate to help as she is massively vulnerable - literally on the brink of death."

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Nina advised me how she and her husband, Simon, are attempting to organise the unimaginable: to get specialist medication into Gaza and, finally, to attempt to get Julia and her household out.

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Nina was modest about an endeavour that I now know has been all-consuming and costly.

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To inform this outstanding story of kindness and hope, I requested Nina to share with me Julia's father's quantity. Our native colleagues in Gaza then tracked the household right down to a tent within the southern metropolis of Rafah.

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Julia Abu Zaiter is from northern Gaza initially. But together with her father Amjad, her mom Maha and her older sister Sham, she was pressured south by the Israeli navy.

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"My girl is three and a half years old. I want her to go out and play with the other children. Now, she cannot move at all," Julia's mom advised our workforce, cradling her severely disabled little lady.

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Rafah is on Gaza's southern border with Egypt. Safety is so shut and but past attain until the best strings are pulled with completely different authorities and governments in a labyrinth of wartime paperwork.

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The photos filmed by our workforce verify what Nina had feared in her message to me.

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Julia and her household are within the hardest of situations. The home subsequent to the tent was bombed just a few days earlier than our workforce visited.

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The Abu Zaiters at the moment are caught within the metropolis that might be the subsequent battlefield and with a daughter whose situation is compounded by simply the slightest stress, slightly lady with, as Nina had advised me, the 'time bomb illness'.

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"I told myself 'it's over, my girl is gone'," Julia's mom advised our Gaza workforce, exhibiting them Julia's semi-paralysed state.

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"Then a man named Simon contacted us and told us he will see if he can help, because his daughter's situation is similar to mine."

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Five thousand miles away, and a world aside, in a leafy northwest suburb of Washington DC, I'm now sitting with Simon, Nina and Annabel.

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It is humbling to take heed to their phrases - about their very own daughter, however about their combat for a stranger too.

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"Annabel lives with the most challenging condition that we can imagine - a neurological degeneration - and she lives with it with a smile on her face," Simon says. "And we're imagining the same for Julia in the most dire of circumstances."

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We take a look at movies of Julia which Amjad has despatched to Simon.

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"Our kids are all so similar… we feel a sense of connection to so many families and our world of rare disease," Nina tells me.

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"This is like that but on steroids. I mean, we feel so distressed for the situation that they're facing."

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"Julia's circumstances are exponentially worse, but I think we've always embraced the idea that we can do something to help, we must do something to help and that we should. I mean, I think it's always been if not us, then who?" Nina provides.

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Amjad's message highlights considerations he has about his daughter. He is in search of reassurance from Simon.

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Julia is experiencing some extreme paralysis and by way of a translated SMS and some images, Amjad needs some encouragement which Simon cannot give.

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"They don't have the medicines they need and the doctors that they need to really treat and properly prevent episodes and to address them when she has them," Simon says.

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"So we've been trying to gather a group that can support her. It's been constant communication and really difficult with the translation issues," Simon tells me.

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Over in Gaza, Julia's mum is determined. "Our conditions due to the war are below zero.

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"Our state of affairs is horrible. I can't present my daughter with any meals or drinks. I can get medicines by a lot of issue, and I inform myself that getting these medicines is extra necessary than getting meals for us."

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Against the percentages, Simon has managed to coordinate with the best individuals to get the best remedy into Gaza for Julia.

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Through the tight AHC community, one physician has prompted one other who is aware of one other and one other. That's how this works. Threads of kindness stitched collectively.

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Now the problem is getting Julia out to Egypt after which on a medical flight to Abu Dhabi. It shall be laborious, possibly unimaginable.

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"And it seems like she's really declined," Nina says trying on the newest movies of Julia.

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"I mean, it seems like exactly what we would have predicted has happened. She has gone from being a happy three-year-old with a profoundly difficult disease to being this shell of herself."

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"I feel like I am losing her," Maha says with Julia in her arms. "She is dying right next to me and I cannot even do anything. The thing I fear the most is losing my daughter."

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There is a few likelihood of an extraction to security quickly. It shouldn't be assured however it's some hope for one little lady in a spot the place uncertainty is throughout.

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This is a narrative about two households worlds aside however certain by a illness.

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I do not but know the way it will finish. This could really feel generally like a world of hopelessness, however I've some hope.

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Content Source: information.sky.com

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