http://Www.disabledmuslimsnetwork.org.uk/

Disabled Muslims Network, London (2026)

15/09/2021

7 year old tayyab is in urgent need of a living kidney doner with the blood group O Positive. Over 18s, living in UK. Across the UK, more than 1,000 people each year donate a kidney or part of their liver while they are still alive to a relative, friend or someone they do not know.

He was born with a condition called congenital nephrotic syndrome. This is when your kidneys are abnormal and was losing protein from them. At 3 months, he had one of his kidney’s removed and sent home. At age 3 He started dialysis. In 2018 his second kidney was removed. He has had so many line replacements. Dialysis access is getting hard now

What we are looking for tayyab’s living kidney doner is. All adults over the age of 18, must have the blood group O Positive. You can be from anywhere in the UK

If you are and are interested in being a living kidney doner for tayyab then we thank you so much in advance & you can contact the transplant team at children's hospital. Phone number is 01213339215. Give his full name and DOB which is Muhammad Razzaq. His D.O.B is 21/12/13, at the hospital he is known as tayyab but also has his full name on the system.

They will then tell you which hospital to go to in your area and what other test will be needed.

If you are interested in being tayyab’s living kidney doner please do send me a DM and contact the children’s hospital , this way I have an idea of how many people are interested

Thank you so much to all who become interested & contact the hospital. You are bringing much needed hope to tayyab & his family.

Please can everyone tag friends/ small/large FB pages and post in your stories to help spread awareness of Our campaign Disabled Muslims Network

24/06/2021

8 year old Hamza was born with a rare chromosome disorder Smith Magenis Syndrome, congenital cataracts and a condition Gyrate Atrophy.
Due to his condition he’s unable to walk, having low muscle tone. The major features of this condition include mild to moderate intellectual disability, delayed speech and language skills, distinctive facial features, sleep disturbances, and behavioral problems.
Hamza also is visually impaired, had surgery in both eyes at 4 months due to congential cataracts and artificial lenses were inserted. Unfortunately Hamza has lost his sight and has gone blind in his left eye due to trauma, he’s now registered as severely visually impaired. Due to Hamza’s behavioral issues he self harms numerous times a day, unfortunately this led to his sight loss.

We raised funds a couple of years ago for Hamza’s build & have had planning permission approved last month. Due to Covid 19 & the pandemic building materials have increased significantly & our builder has requoted double the amount originally quoted. We are in desparate need to bring Hamza on to the ground level, build him a ground floor bedroom with wet room attached. Any amount donated is really appreciated. Disabled Muslims Network

Link to donate is https://www.justgiving.com/crowdfunding/hamzarasheed2021?utm_term=b3vp98jey

15/04/2021

My sister Aksa was in hospital for 85 days. She was sedated and on a ventilator for 1 month and also on the ecmo machine for 27 days which is a machine that does the job of the lungs. Allowing the body to rest.

A few hours after the ventilator was put on, Aksa gave birth while sedated and ventilated. Baby Maryam was born at 23 weeks.

2 days after this we found out Aksa had suffered a brain bleed, a severe type where survival rates were very low. Then a week after Maryams birth we were told that Aksa may not survive the next 24 hours.

My mum is amazing. She found the strength to then visit her granddaughter in the nicu and she visited everyday for 7 weeks, she also officially named Aksa’s daughter and we feel that this did help Aksa. Aksa named her daughter a few weeks befor she got covid 19, talking to all of Maryams doctors and nurses daily. Buying nappies and anything Maryams nurses needed for Maryam.

Then aksa had a tracheostomy for 5 weeks. Then a few weeks on the cpap breathing machine. Maryam was nearly 8 weeks old when she finally got to meet her mummy. They are both our miracles

Below is a message from my sister Aksa

As Salaam aleikum everyone, and thank you to each, and everyone of you who took the time to pray for me and my baby Daugther named Maryam. That was so kind of you all. Your prayers were so powerful together, without your prayers it may have been different.

I have been home for over a month now, Maryam is still in the NICU and in an incubator. She is 3 months old. She is my tiny but strong miracle. Could you all continue to pray for her.

It was a tough road for me, which I'm still on as I am slowly recovering, but I now have mobility problems due to the time I was sedated and not moving. my muscles have wasted away to some extent . so I am not used to walking short distances, but slowly I am getting stronger inshallah . Your prayers and dedication have got me this far. I hope everyone who is unwell with this virus and any other illnesses get better soon. Duas are powerful.

Thank you to everyone who sent me and my baby Maryam wonderful Gifts and get well cards. Brought lots of smiles to my face. I will treasure them forever. Love from Aksa

If anyone’s interested in sending get well soon cards to Aksa then do send me a Private message and I will send you the address.

Disabled Muslims Network

25/03/2021

Asalaamo alakum everyone. I want to take this time to Thank each and everyone of you for constantly praying for Aksa and then her baby daughter after her early birth on the 8th of January at 23 weeks. We wouldn’t have been able to get through all this without our family/friends support and my Dmn family too. It has been a very traumatic 85 days. A lovely friend of mine brought theses wonderful balloons that were created by

Aksa was in ICU for 9 days befor she was put on the ventilator. Then less then 12 hours later she gave birth to her tiny 23 week baby Daugther while ventilated and sedated. which she was on for 31 days. She suffered 2 severe brain bleeds, has severe lungs damage. She was on the ecmo machine for 27 days. She was fitted with a tracheostomy which she had for 5 weeks.

She had 24/7 nursing care for 7 weeks. She was in 1 hospital for 2 weeks. Then a month at a 2nd hospital, then 2 weeks in a 3rd hospital then finally she was at the 4th hospital for 23 days. Altogether she was in hospital for 85 days

I am very happy to announce that Aksa finally came home 2 days ago. We are all so happy and relieved that she is finally home safe to continue her recovery. She is able to walk a little but only with support. But this is amazing, considering she couldn’t weight bear 2 weeks ago. I haven’t seen Aksa for over 95 days. Inshallah with each day she will gain more and more strength.

I want to show Aksa, how many people were and are praying for her and from all over the world.
I have an idea. Would any of you be interested in sending Aksa a get well soon card to show her how much we all prayed and cared for her. I think she will love reading everyone’s supportive messages. Send me a private message and I will send you the address. Do add your name & where your from in the card.

Www.Facebook.com/disabledmuslimsnetwork

08/12/2020

3 weeks ago I had a ophthalmology appointment. I had a routine eye test & I also had a special eye scan. I went back to get the results thinking everything was fine I wasn’t prepared for what I was told. What made it worse was that my mum wasn’t with me. She had another appointment but thankfully in the same hospital as me.

The doctor said that the scan has shown damage to the retina. he compared it to the scan done in September 2019 which was fine. He has diagnosed me with Retinal toxicity, which is a very rare side effect of the hydroxychloroquine therapy, but when it has occurred, vision loss may be permanent and may progress even years after stopping the medication. I was so overwhelmed with emotion and worry.

Last week I had my 2nd Ophthalmology appointment. I had a Visual fields test. visual field test is an eye examination that can detect dysfunction in central and peripheral vision. I have had this test done regularly since the age of 9. Because since childhood I have had something called tunnel vision. Tunnel Vision s a condition when your eyes’ field of vision is narrowed down to an extent that you can’t see sideways like you used to prior to this condition, without turning your head sideways.

I also had 3 different types of eye scans. The doctor said that the visual field test showed that my central vision is being affected by the retinal toxicity. The other scans confirm the diagnoses of retinal toxicity. I’ve been told that even know I stoped the hydroxychloroquine 2 weeks ago. They said that sometimes the damage can carry on progressing. I asked if this does happen. Is there any treatment to stop the damage progression. Dr said there is no treatment unfortunately.

I am still trying to come to terms with this new diagnoses. I find it much harder to deal with something when I wasn’t prepared for it. I’ve worn glasses since 9 months old. I’m used to having sight loss & have been able to adapt to it. But this retinal toxicity. Is hard to deal with when no one can say what will happen next. I am just praying that now that I’ve stoped the tablets. That the damage stays the same & doesn’t progress further. Could you all pray for me. Disabled Muslims Network

03/12/2020

November was diabetes awareness month.

Type 1 Diabetes is a condition in which the body can't produce insulin. Type 1 diabetes is an autoimmune disorder. The body's immune system damages the cells in the pancreas that make insulin. Insulin is a hormone. It helps sugar (glucose) in the blood get into cells of the body to be used as fuel.

It has been 2 years since my little warrior was diagnosed with type 1 diabetes. For anyone who don’t know that type 1 diabetes has no cure and it’s a 24/7 illness, When you have diabetes it effects everything you do in your life, like your eating, sleeping,outings,everything you name it, you have to first think of your blood sugar. My son was diagnosed at 10 months old, through a DKA which is a serious diabetic condition that leads to being in a coma. Luckily my son survived it and he is a happy little sunshine of my life, I wouldn’t be honest if I said it was easy, it wasn’t

But we always believe its Allahs gift for us. My son being diabetic means he is different, he has to go through lots of finger pricks, injections, cannula change and CGMS all of this are so painful and can happen any time and anywhere

He’s growing now, he understands and refuses, he finds it painful & he would sweat and have panic attacks , still seeing him like that doesn’t mean I can stop. Being diabetic means sleepless nights, All the time I would need to wake him up to give him the hypo treatment or change his cannula that failed or give him his insulin injection

Still we are very lucky to be on a pump and have the continues glucose monitor that helps us a lot to catch thouse high or lows. My son being diabetic I could say it’s the most painful thing that has ever happened to us and at the same time the most beautiful thing too, It has made us a lot stronger and we are always willing to be a better person. Www.Facebook.com/disabledmuslimsnetwork

01/11/2020

Down syndrome awareness month means we get to celebrate our children regardless of their milestones. After all, children with down syndrome will still get to where they are going, they may just take a little longer to get there.

My child laughs, he cries, he learns, he is happy and sometimes sad, he is more alike than different... And, I hope the world gets to embrace and accept him just like I do.

There are a lot of names for people like our son. Some are cruel, others are assumptions, but most are from lack of knowledge... doctors call it a chromosomal abnormality, we just call him Yusuf!

Awareness equals acceptance. Yusuf is strong, courageous, incredible, charming, smart, capable, important, victorious and worthy.

Happy Down Syndrome Awareness month friends! Www.facebook.com/disabledmuslimsnetwork

24/10/2020

Happy Downs Syndrome Awareness month. October is a month where we get to celebrate, shout out loudly and bring awareness to our kiddos that rock an extra awesome chromosome!

One thing I worried about when we found out Khaleel would have Down syndrome is how it would affect our family. Well how wrong was I to worry!!

Khaleel has brought us nothing but love and joy. He had shown us how amazing an extra chromosome is. We are the lucky ones to have Khaleel in our lives. He has such a loving relationship with his brothers who dote on his every needs. He has taught us that Chromosomes don’t count.

He is the glue to our family. He smiles with his eyes and has the most infectious laugh. I couldn’t imagine our lives without him and I wouldn’t change him at all. Khaleel has his own personality and to me he’s my baby, not my DS baby.

DS is not a disease or illness that you can get better from. It just means that you will learn differently, milestones will take longer to achieve and have developmental delay. All we want for Khaleel is to be a healthy, happy boy who has every opportunity to thrive and achieve great things. He is loving and kind, funny and curious, chatty and determined and he is down right amazing. We are so grateful for Khaleel as he is a wonderful gift from the Almighty and we wouldn’t change a thing. He is who he is meant to be.

Www.facebook.com/disabledmuslimsnetwork

17/10/2020

October is Down Syndrome Awareness Month. For me, as a mother of two children with Down Syndrome (DS), raising awareness is the first of many steps to creating an inclusive, non-judgemental, accepting world.

Down Syndrome causes hypotonia or decreased muscle tone which makes it harder for people to crawl, walk, talk leading to delayed milestones like delayed speech, cognitive delays and intellectual impairment. Both of my kids were in the NICU for weeks due to congenital heart defects that are common in Down Syndrome. Our kids spent hours doing physical, occupational, and speech therapies helping them strengthen their muscles.

With proper care, right therapies, and early intervention, children with Down Syndrome are able to accomplish their goals. Ahmad and Aisha both go to mainstream school and with help of special education teachers and therapists, they are able to be part of an inclusive school environment.

Ahmad loves to play ball games while Aisha loves to draw and paint. They may not be at the same level as their typical peers but they are working hard to achieve their goals. The first few years are the hardest but things start looking better and brighter when you see your child progress and achieve their goals in their own way at their own pace.

They have given me a purpose in life advocating for them and many other children like them who may be lacking a voice. Special needs parenting journey can be very isolating and lonely at times. The constant fight and struggle for inclusion is our toughest battle. To parents who have a child with DS, I would advise you to walk into the future with hope and not with fear. Www.facebook.com/disabledmuslimsnetwork

12/10/2020

As-salaam-aleikum everyone.

Thank you to ️Inspiring Imaan for gifting 34 Beautifully created tasbihs to our DMN children and teenager for Eid may 2020. You took the time to personally create & focus on each child’s tasbih

I am forever grateful for the love & support you have shown us. It means so much to our special needs families

Disabled Muslims Network

Disabled Muslims Network

15/09/2021

24/06/2021

15/04/2021

25/03/2021

08/12/2020

03/12/2020

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