Allegra Lategan was born at 22 weeks gestational age and
weighed a mere 500g. No-one knew if she would make it, and if she did, what her
quality of life would be.
But Allegra is a fighter. And this month she
celebrates her second birthday.
Read more about her
early days in hospital here.
Allegra spent the
first five months of her life in NICU before being discharged. Her mother,
Chantal, says her first few months were a rollercoaster ride with many ups and downs.
She spent six weeks on a ventilator, had abdominal surgery and many blood
transfusions. She also experienced some cardiac problems with a pulmorary
stenosis and patent ductus arteriosis. These are just a few ‘highlights’ of
her first few months.
Before she turned one Allegra spent another 60 days in
hospital for various reasons and procedures, ranging from respiratory problems
to abdominal complications and very bad gastro-oesophageal reflux.
The biggest problem facing her now is auditory neuropathy.
She has already had one cochlear implant and her family are desperately saving
for her second one.
Strong and happy
Yet despite a very rocky start to life, Allegra is proving
to be a very strong and healthy little girl.
Chantal says, "Overall Allegra is doing pretty well. Developmentally
she is a little delayed with some milestones, for example she is almost two and
is only now starting to walk, but so far there haven’t been any major issues either we or her therapists are worried about."
"Her physiotherapist says that she is making steady
progress, even though she has her own time (and ways) in which she is doing it.
Even though a recent MRI-brain scan has shown some delay in the myelinisation
of the white matter and corpus callosum, she is definitely a clever
little girl, and the developmental paediatrician is very happy with her
She added that previous problems with her lungs, gut and
heart are also fortunately something of the past, although she remains on chronic
medication, as she has a hypoplastic pituitary, low cortisol levels and problems
with her endocrine system.
Allegra turns two on the 29th of July, although if she had
been born on ‘time’ she would be 19 and a half months.
The biggest struggle that she is facing at the moment, is
dealing with auditory neuropathy – a sensorineural hearing loss where the hair
cells are absent and sound is not being transmitted normally from the cochlea
along the auditory nerve. This causes
her brain to get a distorted audio message.
Therefore, even though she can hear certain sounds, she
can’t make sense of spoken language, making it almost impossible for her to
learn, understand and use language. She
had her first cochlear implant in her right ear in April 2013, which may give
her the chance to hear with digital sound, and hopefully help her to learn to
Chantal says that since the implant she is doing great.
"She attends the Carel du Toit Centre, a school for the deaf and
sees a speech therapist once a week. She
also sees the audiologist once a month for new settings to the implanted
electrodes. Already we can notice a
change; she is definitely making more 'baby sounds' and is starting to understand
some words or phrases. Her listening skills have also improved, but it's going
to be a long road with a lot of hard work ahead. Hopefully, if we can raise the
money needed, we can look at implanting her left ear next year.”
But at a whopping R300 000 for the cochlear implant, the
family is relying heavily on fundraising efforts to help them. And that’s not
including the maintenance, repairs and upgrades in the years to come, which adds up to a huge sum of money.
They also need funds to pay for all her therapy sessions,
which include speech, physio and occupational therapy. This is one of the
reasons they’ve set up Allegra's
Facebook page where people can keep up with her progress and see what the
latest fundraising efforts involve.
"We are in the process of setting up a trust fund for her,
in the hope that we may get help from bigger companies," added Chantal.
Despite everything that Allegra has been through, and the
many obstacles that still lie ahead, her parents describe her as "a very friendly, outgoing little girl".
They say she loves to entertain and, "When she looks at you, smiles or pull faces,
you can’t help but to love her to bits."
Together with her
best friend, Tino the Jack Russel, she loves the great outdoors, and her favourite
game at the moment is peek-a-boo and pre-bath "tickle sessions".
"Since she started walking by holding on to someone with one
hand, that’s all she wants to do – as
long as you go where she wants to go. Unfortunately, because of her hearing
loss, she isn’t saying any words yet, so she does not have a 'favourite word'. She can show you with a vigorous hand wave if
she doesn’t like or want something, though. Usually, this will happen during
However, while the future may be daunting in terms of
fundraising efforts, Allegra’s family and friends are just happy to be around their
little miracle and take each day as it comes.
"If there’s one thing that our journey with Allegra has
taught us, it is that we as parents can make plans as much as we want, but if
it is not in God’s will, none of it will happen, no matter what we do. We don’t have any specific plans for her
future, only to always give her the best that we possibly can, to love her, to
raise her to be the best that she can be, and to always let her know what an
amazingly special little girl she is."
"One thing that we know for sure, is that there is a reason
for her being here, and that she is proof that miracles still happen
today. I am sure that being a messenger
of hope and determination is also part of her future," said Chantal.
Facebook page for more information if you would like to contribute to her