WORDS:

MISHAAL

KHAN

AND

RACHEL

TOMPKINS

F

lickingonthekettleinJuly2016,

I madetwocupsofcoffee,likeI

didmostmornings– oneforme

andoneformywife,Alie.She

likedhersblack,nosugar.ButasI gave

themugsa stir,I suddenlyrememberedit

wasonlyonecupofcoffeeI needednow,

andthatfeelingofdevastationtookover

oncemore,consumingeverypartofme.

We’dmetin 1998through

work– shewasa TVproducer

andI workedin specialeffects.

Wehadourson,Jensen,

in October2000,followed

byourdaughter,Phoenix,

in December2002,andwe

marriedinDecember2005.

Aliewasanincrediblemum,

despitehergruellingworkschedule–

checkingonthekidswhenshegotin late

fromworkandalwaystellingthemhow

muchshelovedthem.

Aliethrivedonbeingbusy– butin April

2015,I noticeda change.Assheheaded

outona worktriptoLondonone

morning,shetrippedin her

heels.Alielovedhigh

heelsandI’dnever

seenherstruggle

before,butshe

justshrugged

it off.‘Timefor

someflatshoes,’

shelaughed.

Only,soon

thereweremore

warningsigns.

Whenshetripped

athome,spilling

hercoffee,weputit downto

anotherclumsyepisode– butby

August,shecouldn’tseemtolift

herleftfootandwasstruggling

togetdressedin themornings,

fumblingtodoupherbrastrap

andthebuttonsonherblouse.

Jensen,then14,andPhoenix,

12,didn’tnoticethatanythingwas

wrong,butI did.

TheGPsuspecteda

trappednerveandreferred

ustoa neurologist,who

bookedanMRIscanthat

November.Theresultscame

backclear,butthenAlie’s

speechbegantoslurslightly.

Atanothermeetingwith

theneurologist,hesuggestedit could

bemotorneuronedisease(MND),a

progressiveconditionaffectingthemotor

neuronesandmusclesthroughoutthe

body.Weweretoldthere’snocureandthat

sufferersfindmovingaround,swallowing

andbreathingincreasinglydifficult.

‘Itcan’tbethat,’Aliesaid,

whenweweretoldit more

usuallyaffectspeople

n their60sor70s.

Shewasonly50.

Referredto

specialist,

rofessorTalbot,

t JohnRadcliffe

Hospital,Oxford,

n December,Alie

wasfinallygivena

iagnosis.Shedid

aveMND.Wesatin

theconsultant’sofficeinstunned

silence,untilAliebrokeit. ‘Howlong

haveI got?’sheasked.‘About 18

months,’hereplied.Aliejustnodded.

AsI tookushome,Aliewentinto

overdrive,talkingaboutwills,the

houseandlifeinsurance.‘There’s

somuchtogetsorted,’shesighed.

Shecouldhavebeentalkingaboutthe

weeklyshoppinglist.ButI knewthe news

wouldhithereventually.Untilthen,

I refusedtobreakdownin frontofher,

eventhoughthepainwasunbearable.

Keepingupappearances

Wedidn’twanttoworrythechildren and

theydidn’taskquestions.I suspected they

knewsomethingwaswrong– maybe they

didn’tsayanythingtoavoidupsetting Alie.

Shewasdeterminedtokeepup

appearances,stilltakingconference calls

fromhome.Butin January,withher

conditionworsening,wetoldfamily, close

friendsand,finally,JensenandPhoenix.

‘Yourmumhasa diseaseanddoctors can’t

makeherbetter,’weexplained.Theydidn’t

react.I thinktheywerein denial,unable to

fathoma lifewithouttheiramazingmum.

Asa distraction,AliesetupAllAbout

Alie(AAA),a projecttoraiseawareness

‘It couldn’t

beright–

shewas

only 50’

Thecoupleon

theirwedding

day,in 2005

Alie

As Colin Tilley, 53, watched his wife fade

away, he promised to keep her legacy alive

Doing it for