Jenson's Journey

Jenson's Journey Jenson had his birthday on 9th December 2013 and it was on this day that we were devastated to learn that our little baby boy has Duchenne Muscular Dystrophy.

Jenson diagnosed 1st birthday (2013):

šŸ§¬ Duchenne Muscular Dystrophy (DMD)
šŸ§¬ Duplication 1q.21.1

Autism, Attention Deficit Hyperactivity Disorder &
Learning Delay

Jensonā€™s Journey celebrates the joys & shows the lows so no one else feels alone šŸ™ This is a disease that through time will slowly take away Jensonā€™s mobility, leaving him in a wheel chair. His ultimate fate will be his loss of life because his heart and lungs will eventually cease to work. As you can imagine our world has been rocked and there is no cure for this condition and we feel so helpless. Jensonā€™s Journey is a registered Charity (Charity Number 1160816) with the aims of raising awareness and much needed funds for research for treatments and ultimately a cure for the Duchenne community and eradicate this condition. Please help us by spreading the word about Jenson's Journey to your friends to raise awareness and if anyone would like to fundraise for us please get in touch it will be great to hear from you. By 'liking' this page you will receive updates on our progress and to see how Jenson is getting along. Thanks for reading and hopefully our hope will someday become a reality when a cure is found. When we found out about Jenson's condition we were devastated and our world fell apart so if anyone is going through the diagnosis of your child and needs help - please get in touch as we are here to help so just send a private message.

07/10/2026

So far this week:

Monday: blood tests at home šŸ” followed by rest

Tuesday: school šŸ«

Today: hospital appointment 2 hour total drive šŸ„ & home infusions later this afternoon šŸ” šŸ‘©ā€āš•ļø

As you can see everyday is different for Jenson.

The hospital appointment is to collect his new AFOā€™s and no not to do with aliens or UFOā€™s šŸ›ø šŸ‘½ šŸ˜‚.

AFO medical abbreviation for Ankle-Foot-Orthosis. We call them Storm Trooper Boots!

Jenson has worn these overnight since he was 5 years old to help:

- support feet & ankles
- maintain alignment of joints
- effects help delay tendon tightening known as contractures
- stretches his joints and calf muscles
- delay heel cord tightening and foot drop
- helps with ambulation

Jenson must not walk in these hence why he wears them overnight and whilst resting during the day.

Just arrived so photos to follow of his new stormer trooper boots!

Jenson has been struggling with his frustrations, physical outbursts and becomes increasingly agitated with the continou...
06/10/2026

Jenson has been struggling with his frustrations, physical outbursts and becomes increasingly agitated with the continous medical appointments that affect him weekly.

Itā€™s no wonder Jenson is feeling this way due to wanting to have a routine of attending school, but instead his appointments impact each week and itā€™s difficult to know what to expect from one day to the next. I even struggle to remember where we should be at what time and for what appointment!

Additionally, Jenson hears difficult conversations about him. At appointments he patiently sits hearing the health professionals asking how he is doing and what appointments he has attended recently. The majority of the time the questions are directed at me and Jenson doesnā€™t get spoken to.

He also knows how his body is changing, how he is unable to rise from the floor like he used to, knowing his heart medications have been increased, hearing he needs to have serial plaster casts again lasting a couple of weeks involving both legs. He also lives in fear of falling, having fractures and the biggest fear at the moment is germs šŸ¦ . He knows he has a suppressed immune system so can become unwell which can result in hospital admittance.

Jenson struggles academically and now he is nearing 14 years of age, cannot read or write. He also struggles with counting and number recognition. As he is getting older his learning difficulties create many issues for Jenson when being amongst his peers, especially when joining in with games.

CAMHS (Child and Adolescent Mental Health Service) have seen Jenson several times for a short period and then he is discharged from the service. Last time was back in 2024 when he received an autism diagnosis. He also had help with desensitisation sessions for his fear of needles. Afterwards he was discharged although his mental health was continually impacting our lives.

Last Summer Jenson was added to the CAMHS waiting list due his struggles and aggressive outbursts. A year later he had his first home visit with his new therapist on 6th August. His next visit is planned for 30th October. This makes life extremely difficult for Jenson as almost 3 months have gone since the initial meeting.

Itā€™s heartbreaking seeing how Jenson struggles daily and he is so agitated on a daily basis finding life difficult and feels very much alone. He often finds forming friendships with others his age too difficult and itā€™s tough when he sees others his own age calling on each other to go out and have fun. For Jenson he is very much alone and weā€™re so thankful he has Benji šŸ• and his new kitten Garfield who he says are his best friends.

Itā€™s so much for Jenson to deal with and itā€™s tough knowing we have to keep fighting for him to receive specialist support.

Itā€™s been a huge blessing for Jenson to attend the monthly youth group at Helen & Douglas House hospice and for the amazing team. We now hope CAMHS sessions can become frequent to help Jenson on a weekly basis as itā€™s so much for him to deal with.

05/10/2026

Never a dull moment ā€¦. today Jenson has been given one of the latest NHS urine sample tubes and itā€™s considerably smaller than the usual!

Jenson thought this was hilarious šŸ¤£ and suggested we use our kitchen funnel to help! šŸ˜³ somehow I donā€™t think so! šŸ˜‚

05/10/2026

Another medical Monday, with waking Jenson early so he can apply his ā€˜superā€™ numbing cream to his ā€˜Pedro Port-a-Cathā€™ site in readiness for blood tests.

Today Jenson had fasting bloods taken, so Jenson had to refrain from eating and drinking (except water) for 10-12 hours prior his blood test.

So thankful the community nursing team arrive early, as otherwise there would be a state of emergency as Jenson always declares ā€œIā€™m starving!ā€ šŸ˜‚

Duchenne requires many blood tests and injections, and over the years Jenson has become needle phobic following traumatic attempts to find his veins. Weā€™re so grateful Jenson has Pedro his Port-a-Cath to enable blood tests and infusions.

We never heard of a Port-a-Cath until Jenson started his weekly research trial infusions at Great Ormond Street Hospital. This clever and easy device makes blood tests and intravenous infusions so much easier. The Port-a-Cath named Pedro, sits under the skin in Jensonā€™s chest and looks like a slight bump. No tubes protrude the skin so it is all neatly hidden away under his skin.

The Port is a chamber with a self sealing top where a needle is inserted with use of numbing cream. The Port chamber has a thin soft tube (Catheter) which leads to a large vein near Jensonā€™s heart. He canā€™t feel his Port-a-Cath and although needle phobic is completely happy for Pedro Port-a-Cath to be accessed (used).

The fasting bloods were taken to check his Triglycerides - blood fat levels due to taking Givinostat (Duvyzat) oral suspension for 3 months now. This drug can cause Hypertriglyceridemia which has no symptoms but can cause health issues. Jensonā€™s platelet count has also been tested and since started Givinostat these levels have increased, but now at a normal level and he isnā€™t getting any new bruising which is a side effect of low platelets.

So now Jenson is resting after a busy weekend of a couple of visits to his amazing hospice and an early start for bloods this morning.

Photo of a sense of calm amongst the chaos of life! šŸ˜‚Onlookers would see Jenson happily cruising along in his powerchair...
03/10/2026

Photo of a sense of calm amongst the chaos of life! šŸ˜‚

Onlookers would see Jenson happily cruising along in his powerchair, with his Mumma running far behind trying to keep up with a smile on her face šŸ˜‚

Yesterday we both had an escapism day in Oxford taking in the sights, people watching, window shopping and enjoying all the buzz of an exciting new place to explore.

However, even though we try and escape, I still have received endless emails, medical reminder texts and unexpected phone calls to arrange blood tests, immunisations and a lengthy call to discuss his cardiology health.

Yes it would be easy to ignore these when out and about, but due to Jensonā€™s complex health conditions we never know if any urgent treatments or tests are required. Itā€™s also impossible to return voicemails and therefore easier to deal with immediately.

Jenson finds these interruptions as ā€˜normal lifeā€™ with me having to stop in my tracks to respond. He tends to do doughnuts constantly whizzing around in circles as a boredom buster. I dread lengthy calls with fear his power will be zapped on his wheelchair!

Itā€™s amazing having time together exploring especially knowing what the next couple of weeks will entail.

šŸ„ 4 separate day appointments at Bristol Hospital

šŸ¦  3 separate immunisation appointments

šŸ« school Child In Need meeting

šŸ‘©ā€āš•ļø Home infusions

šŸ©ø 2 separate home blood taking appointments

Itā€™s not easy remembering what is said during phone calls when out and about, so I politely ask for a summary of the call to be emailed to me, which certainly helps.

02/10/2026

Friday Fun šŸ¤© we certainly made lots of people in Oxford laugh today and had wonderful conversations with the terrific tourists.

Kindness of strangers is extremely appreciated. One family stopped and chatted to Jenson, asked if it was okay to speak to him and also if Jenson was happy to see their photos of Sesame Street & Muppets back home! Jenson enjoyed this and it was so lovely and made a welcome change of others asking him permission to chat.

Jenson quite often has people leaning on his chair in queues, talking to him too closely when he feels awkward and anxious and he doesnā€™t like others touch his chair. Jenson always says and rightly so ā€˜well you wouldnā€™t like it if some stranger touches your legs!ā€™

01/10/2026

To be thankful for:

- safe travels
- fun 1-2-1 time with Jenson
- meeting lovely people
- Jensonā€™s great navigation skills
- sunshine
- sparkly platforms
- incredible GWR staff šŸ˜ƒ

What we learnt from today:
- always check we have medications packed for travels
- itā€™s great to chat to others as it certainly brightens our journeys
- Jenson knows his way around Oxford!

No matter what comes our way, the days always work out to be okay šŸ‘Œ

&douglas

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