Archie's Army fighting MD

🩵What a week….and it’s not over yet 🤦🏼‍♀️

We have had 4 appointments this week. The heart appointment went very well.

Then there was the sleep study (again because I set it up wrong last time, sorry Arch), next the infusion and today psychology.

All were good and Archie has dealt with them with such maturity and bravery. ❤️

I can’t quite believe today. Archie has had his heart appointment and to our shock, the tests show nothing but improvement. ❤️
Archie’s consultant asked more questions than us, in particular, questions regarding his trial as in their experience this is rare for children with Duchenne.
We don’t know how or why and we probably never will.
Part of me wonders what the catch is, but for now, I will take the positives.

Happy 10th birthday to this legend! You make us proud every single day 🩵 Xx

4 weeks ago Archie was assessed for a wheelchair.

His tiptoe walking is increasing, which affects his balance, but he also has an extremely curved back from compensating heavy and weakened legs which is making him even more susceptible to trips and falls. At the assessment everyone agreed that Archie is extremely unstable on his feet and requires a wheelchair for safety.

Guess what the letter I received today says….he has been declined because he can walk 🤬

How’s your Friday the 13th going?

Amazing parents evening for this one!

It’s been very different with lots of new changes, but Archie has settled in so well 💙

We are so proud of you little legs!

Mr independent has gone to his school disco 🪩

I was politely asked to stay in the car at drop off and he said he will get an Uber home as they’re all going to the pub after 🤦🏼‍♀️🤣

Joking aside, I cannot believe the difference in him. Archie’s confidence has grown massively and it’s been so nice to see him making so many friends 💙

That’s the lift completed with the final touches 👌🏻 Thanks

Eye check done ✔️

The pressure was high last time so they wanted to see Archie again to make sure everything is ok. Good news, the pressure has reduced and is now in the higher “normal” range and they didn’t need to dilate the pupils 😅

Bad news, Archie isn’t missing school after all, sorry Arch.

Archie you’re amazing. You go through things that other 9 year olds don’t know exist and you do it with such maturity and confidence.
The last few weeks have been hard, I was hit with an illness, which meant I wasn’t much use and you stepped up and did what you could to help. We love you tons and are always proud of you 💙

We were just sat eating lunch at Great Ormond Street, when in the background, behind Archie, I saw this on the news. Archie was facing me and saw our future. His little face, so innocent and unaware. We have done everything we can to change the future for Archie, clinical trials included. But the reality is, we may not stop this for him and others 😞 We already spend so much time caring for Archie doing things we think are normal, but they’re not and it will only increase. They’re just normal for us. Unless you’re living with Duchenne, no one can ever understand what you go through 💙

Mother stays awake for 60 hours as son's care breaks down NHS system for seriously ill people requiring home care is struggling to provide sufficient support.

This 🖕🏻

Guess who started school this week!!! We are so proud of you Archie!

We have had amazing feedback from the staff working with him telling us how mature, intelligent and kind Archie is.

Here’s to a fresh start ⭐️

On the 22nd March we applied for a new school.

Archie left his previous school on the 31st March and has been with me since.

This week is the 13th week without school. Many things have been missed, class photos, sports day, activity day, birthdays, socialising, education, the list goes on.

However, I have been very very fortunate to have been able to work whilst looking after Archie so he has spent most of his time in accounts.

I cannot believe how amazing he has been. It hasn’t been normal for anyone, but my work have been amazing. They have been so understanding and Archie has even received some wages and treats to say thank you for helping out! ⭐️

Tomorrow, we finally have a transition day, where Archie will get a feel for the school and see what year 5 will be like in his new school. We still don’t have a start date but we really hope that it will be before the summer just so that he can experience some normality for a bit 🤞🏻

I have been dreading this appointment.

Archie’s sleep analysis has showed a high carbon dioxide level. Once again we will repeat the sleep study as there is no obvious cause.

His previous 2 studies showed an abnormal level of oxygen, however they have confirmed that this was due to a collapsed lung and these levels have now returned to normal thankfully.

The next step is equipment to help Archie whilst he is sleeping if the next study hasn’t changed.

Just spent the last 2 hours being shown a washer/dryer toilet.

It’s needed for Archie in the future. But honestly, I spent the whole time trying not to laugh whilst the poor sales rep was telling me all the different settings.

Apparently you can adjust the height on the water spray so it doesn’t go in too deep and also there’s a lady setting (I didn’t ask for any more details) 🤦🏼‍♀️

It’s very beneficial apparently and will give Archie some independence, which is great.

The family/ adapted bathroom is next on the list and is very much overdue now after a year without one and I am sure this will be part of it.

Amazing night with amazing people! 🌈 💙

Thank you so much for organising and supporting us!

Poor little legs had an appointment today, to check his eyes. The pressure was measuring slightly high and so they wanted to do further checks to make sure there were no other issues such as cataracts. His pupils are now huge and he spent the whole journey home with his eyes closed because the sun kindly came out ☀️
The joys of steroids 🙄

Today’s reality 💔

Just seconds before this, we were making biscuits.

Then Archie fell…twice. He can no longer get up off of the floor without help and just sat sobbing. Archie wants to know why he is so bad at everything and why he can’t do what everyone else can. I have had to explain to my 9 year old that his condition is progressive and will get worse 😢

I really hate you Duchenne, I always have, but today I really hate you.

A day filled with mixed emotions today.

Archie spent his last day in his current school 🏫

It was a difficult decision, but Archie has not been 100% happy for a long time and actually asked us if he could move elsewhere.

Since starting school Archie has achieved so much, but has also been through so much. Unfortunately, not all of his experiences have been good 😞

Archie is however leaving the BEST teacher ever, who has taken the time to understand him as an individual and I know that he will miss you very much.

Some life long friends have also been made (for both Archie and parents) and I know that those kinds of friendships never break.

I may have been an absolute nightmare to be around for a long time now, but I would really like to thank everyone who has picked me up when I have been down. It isn’t easy having issues at school and it took its toll on me recently. I would also like to thank the staff who have supported Archie and worked with us. Some have gone above and beyond for us 💙

We had an important appointment today with the respiratory team at the hospital.

Archie’s repeat sleep analysis indicated our fears, he isn’t getting enough oxygen.

They cannot find an obvious reason for this so Archie needed some more tests. It’s the waiting game now to see if there is anything that could help 😞

It’s children’s mental health week!

We had our 1st visit to CAMHS today for an assessment to see if it would be beneficial to be under their care. I was really unsure how it would go. Anyone who knows Archie knows how much he LOVES to talk and ask questions, but Archie can be very reluctant to talk about himself.
I am extremely proud of him though. He was so brave. He really opened up and spoke about things that were really difficult for him.
It was extremely difficult for me to hear. I knew that Archie had been struggling for a long time now, but hearing him tell someone how sad he feel’s sometimes was very frightening for me. CAMHS have added him to the waiting list and he will be seen ASAP.
Archie had a cry on the way home and opened up some more which is unusual.

If anyone has any advice whilst we wait, we would appreciate it 💙

We have new splints! ⚽️ 🏀

Archie will wear these every night. He has been without these for 3 months now as his last ones caused sores and the range in his ankles have definitely reduced.

Let’s hope these ones don’t come with any issues🤞🏻

A rare day out with just Archie today. He misses out on so much. He seems to always have an appointment these days and often misses out on school, playing with friends or spending time with family. Not today, we played, ate calamari and steak and now we’re watching a film. Archie says he has had the best day 💙 He also says his condition came in handy as he won 1000 tickets on a game that require a light touch, with stronger muscles, he would have lost: Duchenne 0- Archie 1 💪🏻

Last night we had a repeat of Archie’s sleep test to see if his oxygen levels being low were a one off or if it is something that needs to be looked into.

Of all of the tests, examinations and procedures that Archie has, he hates this the most. We had some tears, because Archie worries about the alarm going off and there being something wrong, but he managed to get some sleep and the alarm didn’t sound at all.

Me on the other hand, I don’t think I stopped looking at his heart rate all night so I feel like a zombie today 😴 I really hope his last results were due to an illness or similar and that this time, everything is ok 🤞🏻

Just found Archie’s Christmas cards in his bag 🤦🏼‍♀️

There was a really special card in here from one of his best friends saying “I hope your legs get better” 💔

Archie has some brilliant friends who sense when he needs help. I have watched his friends go downstairs to grab him a drink, put his shoes on for him, help him off of the floor, carry his bag, push his wheelchair, the list goes on.

I am grateful for every single one of his friends who are on this journey with him because Archie’s condition has an impact on every single person who knows him in some way.

Some kids can be really cruel, but some are amazingly kind and make it that much easier!

💙❤️

I think we are the most unlucky people when it comes to resting splints. Archie is allergic to the lining so has to have an alternative. Unfortunately, this reacts with the sweat and creates mould meaning we have to have his splints re lined quite regularly. The last re lining wasn’t great and a ridge was left inside, this created a sore which became infected and required antibiotics. We are now back be re casted to have new splints. Hopefully this time all goes well 🤞🏻

We are so proud of Archie. He has attended so many appointments recently which has meant missing a lot of time at school, playing with friends and doing any other normal things. Tonight he made me a gift, wrapped it and then handed it to me and said “it’s nothing much”.
It’s everything to me that he he put so much effort into wrapping it up and thinking of me 💙

For a while now, Archie’s behavior has been testing to say the least. There have been daily battles and Archie has argued, been rude, negative and disrespectful.

Since Monday though, something changed and he is his old self. He is helpful, caring, respectful, doing everything he is asked and is smiling again. We don’t know what it is that triggers the bad behaviour, we thought it could be his steroids, but now I’m not so sure. Whatever it is, we are enjoying this new attitude and hope it stays ❤️

Thank you isn’t enough! are so kind and thoughtful. The boys love their gifts 🎄 🦋

Todays physio wasn’t exactly a success 😔 Every time we go now, we see more deterioration. Archie doesn’t tell me how much pain he is in. I only ever get an insight into this when a professional asks him if he is able to move in a certain way and he struggles whilst gritting his teeth in pain. It seems his fall down the stairs has caused some muscle damage and Archie is still getting leg pain and feeling the affects.

Perhaps I was always in denial or maybe too hopeful, but for a long time until now all of his appointments were great. No one could believe how well he was doing. I hoped and believed that a treatment would stop Duchenne in time for Archie. The reality is that it is too late and he is already losing to it.

I feel guilty writing this as I have just learnt that someone else has just been forced to say their goodbyes to their son, aged 12 because of Duchenne and I know that no words can comfort the family. My heart breaks for them as if it were my own son. I am angry that people are losing there children to such a devastating condition. Duchenne rips away the hopes, dreams and futures of innocent children and it isn’t fair. I want a cure, I want to stop this!

I am guilty of getting wrapped up in the small things that shouldn’t matter. From now I am going to do my upmost to ensure that Archie is happy and loved, everything else can b******s!

Emergency training for hydrocortisone administration complete.

When Archie fell down the stairs he was failed by more than one person (myself included).

111 were great and despatched an ambulance immediately because they knew he was on steroids.

The hospital however didn’t even lift up his top to examine his back nor did they X-ray him. When Archie showed them his emergency steroid band, they just robbed him off and told us he was fine.

I should have listened to my gut and administered them myself, but instead I trusted the professionals.

Today Great Ormond Street have been amazing as usual. They have offered us an X-ray to check for any spinal injuries caused by his fall and confirmed that emergency steroids should have been given and Archie is very lucky.

Having a rare condition shouldn’t mean that you have to constantly battle with professionals to ensure your child gets the care that they require. Always trust your gut and never back down 😞

Don’t forget to sign up! 🎅🏻

Another date for your diary 🗓️ but get signed up now (link below) to avoid missing out!

Sunday 4th December is the Santa Dash & Dawdle, hosted by Broughton Alive and supported by Squirrels.

This is a really fun and family event, with the option of either a 3k or 5k run, dressed up as Santa.

We are also looking for some marshals for the event. If you are able to get help, or have any questions, please get in touch.

https://www.evententry.co.uk/broughton-alive-8th-santa-dash-and-dawdle?fbclid=IwAR31wbxYYM0k3b1hwzsBOXMY6n5GOLVlIH-V6Fzg1G1WmEoB-nc0rQfUsGU

The lovely Squirrels Running Group are supporting Archie’s Army. Get yourselves signed up to this family friendly event 💙

Another date for your diary 🗓️ but get signed up now (link below) to avoid missing out!

Sunday 4th December is the Santa Dash & Dawdle, hosted by Broughton Alive and supported by Squirrels.

This is a really fun and family event, with the option of either a 3k or 5k run, dressed up as Santa.

We are also looking for some marshals for the event. If you are able to get help, or have any questions, please get in touch.

https://www.evententry.co.uk/broughton-alive-8th-santa-dash-and-dawdle?fbclid=IwAR31wbxYYM0k3b1hwzsBOXMY6n5GOLVlIH-V6Fzg1G1WmEoB-nc0rQfUsGU

We loved being apart of this! ❤️ thank you 💙

Poor Archie 😢 On Friday night he fell down the stairs and hurt his back. He has been checked at the hospital and he has badly bruised himself.

This week has taught me to stop getting caught up in the little things that don’t matter and to focus on the things that make us happy ❤️💙

This morning I unexpectedly received a phone call asking me to take Archie to the hospital urgently as he required an emergency chest X-ray. I wasn’t told why, just that his sleep study picked up something not right that they needed to investigate.

After having the X-ray and then speaking to the consultant, I was informed that Archie’s oxygen levels are dipping during the night and his heart is having to work harder. They expected to find a chest infection but the X-ray showed a clear chest.

The sleep study will be repeated to determine why the levels are dropping and IF there is anything they can do to minimise this.

This years costume! 💀 We definitely got wet this year! 🌧 but we still had fun! 🎃

He’s in! We started adapting our home for Archie in May and tonight he is spending his first night in his brand new room.

We wanted it to be a fun space so he has a gaming desk to play his games (and do homework of course), a bunk bed so his friends can stay at the drop of a hat, a chalk board so he can make his mark, a flashing light so he party and best of all…it’s all safe and accessible. Myself and Wayne are so relieved to have Archie finally in a space that is dust free without storage boxes creating obstacles or carpets half cut out.

There is still plenty more to do around the house, but we made this a priority and Archie is glad to be moved in and he loves it! 💙

Happy 9th birthday Archie 💙 We love you so much, keep being you 😘