Reader’s Digest Australia & New Zealand – May 2019

READER’S DIGEST

May• 2019 | 121

dren’shospitalinOhioparticipate.
However,theethicsboardandre-
searchcoordinatorsfromthehos-
pitalhadconcerns.Deliveringan
enzymedirectlytoa child’sdelicate
brainhadneverbeendonebefore,
anditwasascaryprospect.“Even
withrarediseaseswherechildrenare
dying,wedon’twanttohasten their
death,”DrdelosRey-
esexplained.
Sheinvitedthehos-
pital’sdecision-mak-
ers toher clinicto
meetchildrenwith
Battendisease.Some
had never seenan
aff lictedpatient.By
theendofthetour,
oneoftheresearch
directorswascrying.
“Emily,wewantto
help,”shesaid.Need
wasweighedagainst
risk,andthehospi-
tal’sparticipationin
thetrialwasapproved.
Threechildrenwereenrolledat
theOhiosite.Onebyone,startingin
December2014,theyhadcatheters
andportsinsertedintotheirskulls.
Afterthat,DrdelosReyesusedthe
surgicalimplantstoadministerthe
infusions.
Weekspassed,thenmonths.None
ofthethreechildrengotsicker.They
maintainedtheirmotorskillsoreven
madegains.“Theywereacquiring
new words, which is so important,”

saidDrdelosReyes.“Theycouldtell

theirfamilywhattheywanted.”

The first trialresults weren’t

releaseduntilMarch2016.Onav-

erage,participants’clinicaldecline

was 80 percentslowerthanexpect-

edduringthefirst 48 weeksoftreat-

ment.Innearlytwo-thirdsofcases,

the disease stabilised.Battendisease

effectivelyhadbeen

haltedinitstracks.

Newsoftheresults

reachedtheBeishes

inlateJanuary2017.

Hollieimmediate-

ly calledDr de Dr

losReyes andlefta

message:Shewanted

Connerinthetrial.

When Dr de los

Reyescalledback,she

offeredto evaluate

Connerassoonasthe

Beishescouldgethim

toOhio.On March

12,2017,Hollie,Jeff

andConnerpiledintothefamily’s

SU Vfortheeight-hourdrivethrough

snowandslushfor an appointment

thenextday.

AG ON ISI NGWA I T

Intheexaminationroom,Connersat

ona narrowgreentable,a sippycup

inonehand.WhenDrdelosReyes

camein,Holliewasstruckbyhow

tinyshewas– scarcely1.5metrestall.

“Hi,Conner,”saidDrdelosReyes.

“You’re holding that cup very well!”

Hollie

immediately

calledDrde

losReyes

andleft a

message:

shewanted

Connerin

the trial