READER’S DIGEST
May• 2019 | 123ReyeswouldtreatConneratherclin-
ic.Hewouldbepartofanexpanded
researchcohort,monitoredforlong-
termsafetyimplications.
“Telluswhenweneedtobethere,”
Holliereplied.
Then shecalled Jeff, whowas
driving a semitrailer and didn’t
immediatelypickup.When heno-
ticedseveralurgent
notificationsonhis
screen,hepulledover
andcalledhis wife
back.“Icriedmyeyes
out,”Jeffrecalled.“You
havenohope.Then
yougetthecall.”
Conner’ssurgery
was scheduled for
May22.Themorning
oftheprocedure,Hol-
liereassuredConner,
whoseemedscaredof
goingintoa big,cold
roomwithouthispar-
ents.“You’regoingto
gotosleep,andwhenyouwakeup,
you’llseeus,”Holliesaid,givingher
sona kiss.“EverythingwillbeOK.”
AfterConnerwasputunder,a sur-
geonslicedthroughthefirstlayer
ofskinontherightsideofthelittle
boy’sforehead.Nextcameantisep-
tic,followedbya localanaesthetic,
andthesurgeonmadea secondcut
throughmuscle.
Oncethebloodwasclearedaway,
thesurgeondrilledthroughbone,
then penetrated the dura, the thin
greylayeroftissuethatenvelopsthe
brain.Thesurgeondouble-checked
thathewasintherightplace,then
picked up asmall plasticdome
attachedtoa thintubecontaininga
catheter.
Thesurgeonguidedthetubeinto
Conner’sbrainuntilthedomewas
f lush with Conner’sskull.Thiswas
theportwhereTPP1
would be injected
every other week.
Fromtheretheen-
zyme would f low
throughthecathe-
ter and soak Con-
n e r ’sb r a i n.
After a doctor
stitched Conner’s
scalp back togeth-
er, the little boy
wasbroughtoutof
anaesthesia.Hollie
andJeffwereallowed
toseehim.“Hi,bud-
dy,”Jeffsaidsoftlyat
hisbedside.TheBeishesclimbedup
oneithersideoftheirson,wherethey
stayedwhileheslept.
Connerwenthomethreedayslat-
er.Twoweekslater,Hollietookhim
backforhisfirstinfusion.Herfather,
Bruce,wentwiththem.Jeffstayed
behindtothrowJaxonhiseighth
birthdayparty.Asever,theBeishes
triedtokeeptheirlivesnormal.
Whenthemedicalstaffattempted
toaccessthereservoirinConner’s
scalp with a needle, there was stillInthe
coming
weeks,
Conner
wouldlearn
tofeed
himselfand
say“Da”
for Jeff