PATIENTS LIVES MATTER Because Patients Lives DO Matter
Eulogy for Balram 20th August 2023
Balram was the first grandchild of Manjula Dinesh Patel and Dinesh Jasbhai Patel,
and Inder Katyal and Josephine Katyal. And his sister is Umika Jayesh Patel.
He has many cousins, uncles and aunts and few grandparents still alive. He was
born on 1st March 1993, around 08:42 p.m. in the evening at Guy's hospital. His
birth was actually induced because his first life threatening condition was
diagnosed before he was born. It was, in fact, the second scan at the Royal Free
where the radiographer looked at the heart and said something didn't seem quite
right. She requested that we go to Guy's. We did so immediately and when we got
there they scanned him whilst in his mother and said that we were going to have a
child that was going to born with a the very rare heart condition.
After he was born, they scanned him the same night and diagnosed his first life
threatening condition, which is a very rare heart condition called Pulmatrisia with
right ventricular hypoplacia. At the same hospitalization, he had three major
operations in his first couple of weeks of life. They told us that we wouldn't have
long with him, and we should brace ourselves for that. Whilst in hospital Balram
became jaundice, which is quite common, but in his case, it wasn't a blocked bile
duct, which is what one would normally expect, but a very, very rare liver
condition, condition called patient ductas phenosis with focal nodular hypoplasia.
This was his second life threatening condition and one that contributed to his final
passing.
As Balram grew older he was diagnosed with his third life threatening condition
called severe scoliosis. He was never treated for this as the benefits didn’t outway
the risks.
In 2007 Balram, spent 81 days at Evelina Children's Hospital and was
diagnosed with his fourth life treating condition called plastic bronchitis, which is
very, very similar to cystic fibrosis. During his 81 day hospitalization, he actually
arrested on the 27th December 2007 whilst Louise and I were holding his hand. It
was miracle that he pulled through. After surviving the arrest they gave Balram
less than a 5 % chance of pulling through. But by God’s grace he did.
About a year later, Balram woke up in the morning vomiting, saying, “Daddy, I feel
sick.” Nothing unusual about that, other than the fact, he vomited over a litre of
blood. He had never vomited blood in his life. He was then diagnosed with his fifth
life threatening condition called called portal hypertensive gastropathy, which is
essentially bleeding from the gut.
Finally, around four weeks ago and about 2 weeks before he passed Balram was
diagnosed with his sixth life threatening condition called BCLC stage D Liver
cancer.
Balram also had a dozen or so other conditions throughout his life, hyperlycemia,
bitter bone disorder, Hypotonia, development delayed and many, many others.
So, as I said, we never knew how long we had with Balram. So, we always tried,
to ensure that during his time with us he did as many religious Pious activities and
pilgrimages as possible. At the age of under a year or so we took him to Detroit,
and we attended a Bhagyat Katha by Rameshbhai Oza.
Just before his second birthday, we took him to India, on a lovely Jatra where we
visited to Vrindavan Dham, Rishikesh, and some of our upmost holy places in
India. He celebrated his second birthday in Delhi. As life progressed, we took
Balram to Pujya Murari Babu’s Katha in Detroit when he was around two/three
years old. He's attended so many other Kathas narrated by very many saints.
Along with reciting 108 Hanuman Chalisa’s with his beloved Ram Bapa every
birthday until COVID arrived.
Pujya Ram Bapa used to say when Balram would come to the Hanuman Chalisa.
“Balram beta tari vagar andharu che” translated in English meaning “Balram
without you at the Hanuman Chalisa, there's darkness.”
That's what we are experiencing now and I am sure a lot you you are too. Balram
Beta without you our lives have fallen apart and we miss you so so much and
there is such a huge cloud of darkness in our lives.
It was a double-edged sword of him being here for so many years. Loving him to
bits, we have had so many lovely memories, and they will live with us forever.
Balram paved the way for us to go back to Godhead, while simultaneously
spending so much time with his loved ones and others.
Balram was our angel. And will always remain our angel. I think we all experienced
Balram in our own way and many will cherish those memories and experiences for
forever. He was a gifted angel making people happy and putting a smile on
everyone’s face. He loved his bhajans, he also loved English music. He loved
Father Christmas as well as many other characters like Teletubbies (as a
baby) and Mrs. Brown and South Park later in life.
He loved his Guinea pigs. Meaning, Umi’s guinea pigs. Bonbom and Burbuha. He
loved everything. He made people happy everywhere. And people that didn't even
know him were in his aur. So many of the nurses, that had not even treated
Balram, but just gone into the room to either help with something or see him
walking up and down the wards would come say to us wow, your son is incredible.
And people that have never met him, we're getting messaging us as they either
heard about him either directly or indirectly.
I won't dwell any more time on saying about how much he gave us, cause we all
know that in our own way.
There are some extra special thanks that Balram would have appreciated me to
give on his behalf. There are so many people, so many, but I'm going to limit to six
because of time limitations.
The first is to his mum, Louise, for being the most phenomenal mum in every
possible way. Nobody could have asked for any more unconditional love,
unlimited, endless devotion, sacrifice, nursing, 24/seven for over 30 years. If you
could say something now I know he would say “Mummy”. “I love you mummy.”
“Thank you so much.” “ I will Love you forever”.
Then his sister Umika for providing all the love, fun, and care a brother could ask
for. And even more again and again.
His bro, Sebastian, who always made time for him whenever Balram asked for
anything. Thank you so much for the flexibility and love whilst looking after his
baby sister, Umika.
To his Mota papa, ( My Brother Dhrupesh) for being his Mota papa in every sense,
not forgetting the countless Detroit to London flights and personal sacrifices
throughout Balram's life.
And his dear Pallu Foi and Arun Fua ( The driver) , extending themselves beyond
and beyond repeatedly, especially since covid and even more so the last three
months.
And finally, his dear Manju Baa. Who, from before he was born, was praying for
him. Baa you have gone out of your way, on countless occasions to be there for
Balram, to do all the spiritual activities that were appropriate, and that he loved,
enjoyed and cherished being with their right till the end, supporting him, supporting
his dad and mum, supporting the entire family. “Manjuba. I'm at a loss for words”
Is probably what he'd be saying, “But I look forward to seeing you on the other
side. We can carry on all our bhajans with all the other family members that are
there too”
I think Balram would have liked me to share some of the fondest memories that
we have.
For me I must start with his cuddles. He gave the most phenomenal cuddles to me
throughout his life, especially on my reclining chair in the lounge. When as a baby,
he'd have his head tucked up under my chin, and his feet halfway up my belly
button. In his later years where we struggled to squeeze together. He would, after
being prompted, by his Daddy. And then shortly afterwards say, “daddy, can you
leave now please? “Because it was too tight” and then he would apologise and
say I am sorry daddy.
The phenomenal Bhagwat Sapta that we had in aid of him in March 2008 at home.
The history behind the 2008 Katha, was on the 27th of December Balram
arrested, as I mentioned earlier, Balram had a cardiac arrest and it was very
unlikely he was going to pull through. Doctors had virtually given up, but said, after
he pulled through the cardiac arrest that he had less then 5% chance of pulling
throughout.
At that time, I sort of had a conversation with him upstairs, and said, when my
Balram comes home, we are going to have a phenomenal katha for him, because
he's such a liberated soul, and that's what he would have wanted. Time passed
and I forgot about that. And, Balram did come home, but not in a coffin but in
person.
I woke up one morning after he arrived back, and I thought, my God, what about
this promise that I've made? So, I said to myself that we've got to have the most
phenomenal katha ever because Balram is now here in person, which is worth
rejoicing for even more. And that's how the Katha concept was formed. I told my
family and said, I'm planning this Katha. And it was organized in less than a
month, he absolutely adored the Katha. We had all his brothers and sisters from
all over the world there. Which he loves. The entire Katha was recorded. The
supta was out of this world and was done in the traditional way with a priest and
musician and 2 seasons of Katha and 3 seating of Prasad etc.
I have, in the last eleven days replayed the entire katha again, so that Balram can
listen to it and enjoy it in its entirety, which is very important to us as Hindu’s at this
time. We can remember and rekindle those lovely memories.
The third incident was the boating. We spent over nine months in the French
canals in 2002, and over five years or so living on the boat in Comaruga in
mainland Spain, as well as in Majorca. We had great times together as a family,
with lots of family members visiting us, creating memories, we will cherish forever
and a day. Balram also spent a lot of time on the Thames. Where he spent
copious hours feeding his ducks. I remember often buying 20 loaves of bread from
Tesco's because we had to have fresh bread, as he often used to have the odd nibble
here and there. So old, stale bread was not an option. I think Tesco's thought I was selling
them. These lovely memories will live on for ever.
The farewell from Balram to everyone before he left was something extremely
unique, something that will stay with us forever. He said his farewell to his Pujya
Bhaisri, and Pujya Swami Ji, and Shyambhai via a WhatsApp call. I don't know
how we managed to get hold of these saints, but we did, and he spoke to them in
his last weeks.
On the day he left the home for the last time he sat with Bombon and Burbuha
individually, the two guinea pigs at home. He spent a few minutes each. He never
ever did this.
Prior to leaving the house, he sat in bed and firmly said to me, “Daddy, I'm not
coming back.” He meant it. I said, “Balram, Beta, you will be coming back. Don't
worry Baby. .” He did come back, but not in person. And he also said his farewells
to his beloved Manjubaa. His Pallu Foi, and Gitaben. Gita Bhane was going in the
opposite direction. She couldn't control her emotions, but he said his goodbyes to
her. That was a very special moment for me.
I suppose, another thing about Balram that will always stick with me is that as he
grew up, he continued to retain his child like mannerisms and cuddles and warmth
and antics and his pure, unconditional love. As kids grow up, you know, they
become young teenagers and then adults. But Balram always kept that beautiful,
beautiful, beautiful, Baludi about him, and that I will cherish forever and a day.
The phenomenal love that he had for me, Louise Krishna, and Umika is
unmeasurable. He individually connected with so many others too, which I thought
was out of this world. It is so lovely to see all of you here today having your own
individual connections, memories, and experiences with our beloved Balram. I
love the way he specially connected with his Manju Baa, who he loved so much
and who loved him so so much. Sebastian, his big bro who are so close. His Mota
Papa, his Pallu Foi, his Dood and Nana (Louise’s mum, and dad) all his cousins
and uncles, grandparents all over the globe. So many relatives and so many non-
blood related loved ones that he touched and connected with.
It's phenomenal for me to just sit back and think of how many people Balram was
connected to throughout his life here on this Earth, and how many people he's touched,
and how many people have been touched by him.
And so many people, even subsequently changed their ways of life. You may not
know that my yacht charter company has now raised over four million pounds for
over 1,000 charites world wide in the last 10 years plus and that’s due to the
experiences that we've had with Balram and the strong urge for helping others.
Like I said, there's so many other things I'd love to say, but we just don't have the
time.
When I think about it, it was surreal how Balram connected with so many saints
and priests globally. I remember in 1994, we attended a Katha recital by Pujya
Bhaishree in Detroit USA with Balram.
When the Katha finished, we went to the airport, Louise was trailing behind with
Balram, in a push chair, and I was running right to the front trying to keep up with
Pujya Bhaisri. There Puja Bhay Shree met, Swami ji Chidananda Saraswati Ji as
they were flying together, going to another place in the States. And Bhaisri said,
“Where's our Balram?” I wanted to introduce Balram to Swamiji. So Balram was
carried right to the front over the heads of these numerous devotees and was
presented to Swamiji. And Bhaisri said “Swamiji, you should be introduced to
Balram. This is a phenomenal soul. This is our Balram.” That's how we were
introduced to Swamiji.
I also remember that after the Katha we went to the sumbhav katha that was held
in London. The main aim of the Katha was to integrate all the religions of the
world. Louise, Balram, and I, went on our own to the evening session at a Hotel in
Harrow. There were about 1,000 attendees and we didn't know anybody there.
And a total stranger came up to me and said, would you like to do the darshan of
any one of the Saints? I said, sure. He said, which one? I said, but all of them. He
said give me a chance and name one. I said, how about Bapu? He said, sure. So
as Bapu was walking along, he stopped him and said, Bapu, this family would like
to do darshan of yours? Bapu looked at Balram and then said, okay, bring them to
me later.
In the evening we joined the massive cue for Bapus Durshan and a young man
came over and said, please follow me. And we followed. We ended up right in
Bapu’s havan kund, Murari bapu on one side of the havan and Louise, Balram,
and I on the other side. He said, what are Balrams difficulties? I explained briefly
about his medical situation. And he said, if I can ask you to do one thing. I said,
sure, Bapu whatever you ask. He said, please make sure you do one Hanuman
chalisa for Balram every day. I said, Bapu, if you don't mind, I can tell you that, in
fact, we've been singing one Hanuman chalisa every day from before he was
born, because my mother told us to, and we had this passion for Lord Hanuman.
Puja Bapu looked at Louise and said, does your wife sing them as well? I said, oh,
Louise knows them better than I do.
And another incident, relates to Gurudev. I remember Dr. Ram Gurg in Detroit
said, I want Balram to come to the USA and meet Gurudev and take Gurudev's
Blessings. I told Dr Gurg it's going to be hard to do, as Balram is not allowed to fly,
but leave it to me.
So, to cut a long story short, Gurudev was coming to London, and he's doing
three katha’s. I tried endlessly to speak to his volunteers, stating, Balram would
like to do darshan of Gurudev, that is what Ram Garg would like and Gurudev
would like. But they just kept me away and said, no, I'm sorry. He's too busy. So
eventually we went to the first event at Harrow Leisure Center, and there were
huge cues and crowds so as Gurudev was leaving we sat at the exit. As Gurudev
was leaving, he came out and went out of his way to come and see Balram. He
looked at Krishna Louise, Umika, and I and he said, “Who's this young man?” I
said, this is Balram. He then looked at Balram and said, Balram, close your eyes.
And Gurudev folded his two hands together, and then open them up, and out
dropped a Shivling into Balram Hands, which we still have at home in our temple.
We said, Balram, this is a special present for you. And he then said we need to go
and do his Dershan.
So now we got Gurudev’s invitation to come and see him, which we did the next
day. Gurudev could tell the future as well as the past. He asked me and said,
would you like to know about Balram’s past? And I said Gurudev, frankly I
wouldn’t, because I don't want to affect the way I may Love Balram depending on
what you say. And you may some say something that might derail me. He said I
am going to tell you anyway. I said If you feel I need to know, then I respect that.
And he said to me that he was the highest calibre Buddhist monk before he
arrived in our home, and his onward path is destined to go back to the Lord. A
couple things happened in his previous life, which is why he's with us. Then he
asked us, does he get scared? I said, yes, he does. He said, “Oh, don't worry
about that. Just reassure him.” Then he said, is he on the path of spiritual love? I
said, 1000 %. I said, he loves all his saints, gurus and bhajans. He said, well,
that's great. continue with that.
As I mentioned earlier, Balram’s conditions diagnosed before he was born and
during that time, I had my own underpinning company. I recall, underpinning a
house for Reverend Mike Wood in Stretton in South London.
And I asked Reverend Wood a question.
I told Reverend Wood I studied Christianity at school. I'm a Hindu. I understand
both religions quite well.
I can understand and accept my child suffering before being born because of re-
incarnation but I don’t understand how my child could be suffering from Birth
without the concept of reincarnation.
I asked how do you explain that in Christianity. His answer to me is, well, Jay, it's a
difficult question, but the reality is that he is not suffering because of anything he's
done, but is suffering for mankind. And that child a Angel from God. I never read
much into that at the time. But then, after Balram was born, all these little things
started all making sense. He was happiness, personified. He loved everybody. He
showed passion, like very few people do. And even on those that inflicted pain on
him, be it a doctor, or a nurse that's trying to get lines in, or be it people that
wouldn't respond back to his phone calls, or people that, you know, he kept
ringing, but never rang back. You all have had your own experiences with Balram,
and I don't need to tell you all of ours, I'd love to, but I don't have enough time to
do so. But he is an advocate sent by a higher entity to bring happiness.
As a baby, I remember on the wards that if any other baby cried, he'd cry. We'd
have to pacify all the other babies so their spokesperson Balram Patel wouldn't
wake up the entire ward. In fact, when we left hospital, I remember buying three
electric swings for the nurses so they could put the babies in the swings if they
cried as we were not there to pacify them.
We always realized we didn't have long with him. Looking back I strongly believe
the only reason we've had this amount of time with Balram is because of the
limitless love his mother had for him and the love he had for his mother and the
fact he wanted to continue making people happy and help them in his own little
way.
I seriously believe throughout so many episodes of his life, he would have left us,
but he wanted to stay on until he eventually did go.
Before we start the bhajans, I'd like to tell you that we are in the process of
forming a charity, in honour of Balram called “Patients Lives Matter.” We've done
so because, Balram was directly and indirectly an advocate for others.
During his life, we have taken the NHS to court, the local authority to court, the
social services to court and had so so many issues that we resolved.
We've learned so much in his two years or so Balram spent in hospital and even at the
end, things weren't right, in fact things were very wrong.
In summation the purpose of the charity is to support parents and those helping
and or caring for others to navigate the wilderness of what patients’ rights are and
how they can best help their loved ones especially when you're at the end of the
tether and you're not getting anywhere.
Please help us by signing and sharing our petition. It will not cost you anything to sign:
Our petition on Change.Org:
Also informing families on which kind of charities can support them and in which
capacity and under what limitations and make life a better place. Please feel free
to visit our web site. You will learn a lot more about our story their too. The website